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AJOB Empirical Bioethics
ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/uabr21
Patient Perceptions on the Advancement of
Noninvasive Prenatal Testing for Sickle Cell
Disease among Black Women in the United States
Shameka P. Thomas, Faith E. Fletcher, Rachele Willard, Tiara Monet Ranson
& Vence L. Bonham
To cite this article: Shameka P. Thomas, Faith E. Fletcher, Rachele Willard, Tiara Monet Ranson
& Vence L. Bonham (13 Feb 2024): Patient Perceptions on the Advancement of Noninvasive
Prenatal Testing for Sickle Cell Disease among Black Women in the United States, A JOB
Empirical Bioethics, DOI: 10.1080/23294515.2024.2302996
To link to this article: https://doi.org/10.1080/23294515.2024.2302996
© 2024 The Author(s). Published with
license by Taylor & Francis Group, LLC.
View supplementary material Published online: 13 Feb 2024.Submit your article to this journal View related articles View Crossmark data

AJOB Empirical Bioe thics
Patient Perceptions on the Advancement of Noninvasive Prenatal Testing
for Sickle Cell Disease among Black Women in the United States
Shameka P. Thomas
a,b
* , Faith E. Fletcher
c
, Rachele Willard
b
, Tiara Monet Ranson
b,d
* and
Vence L. Bonham
b

a
School of P ublic Health, Harvard University, Boston, M assachusetts, USA;
b
National I nstitutes of Health-National Genome R esearch
Institute, Bethesda, M aryland, USA;
c
Center for M edical Ethics and Health P olicy, Baylor C ollege of M edicine, Houston, Texas, USA;
d
School of P ublic Health, University of Washington, Washington, S eattle, USA
ABSTRACT
Background: Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic
conditions, is increasingly being implemented as a part of routine prenatal care screening in
the United States (US). However, these advances in reproductive genetic technology necessitate
empirical research on the ethical and social implications of NIPT among populations
underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).
Methods: Forty (N = 40) semi-structured interviews were conducted virtually with Black
women in the US (19 participants with SCD; 21 participants without SCD) from June 2021 to
January 2022. We employed a qualitative approach to examine the study participants’
perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were
analyzed using NVivo 12 qualitative software.
Results: The themes revealed the complexities involving the intersectional lived experiences
of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The
results further revealed that even when Black women have shared commonalities in their
lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening
technologies are divergent.
Conclusion: Expanding the ethical discourse on the social implications of NIPT is critical to
fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to
screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in
empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain
reproductive choices among Black women with and without SCD.
Background
Noninvasive prenatal testing (NIPT) for genetic con-
ditions is designed to use cell-free DNA (cf-DNA) in
maternal plasma to screen for fetal genetic abnormal-
ities during pregnancy (American College of
Obstetricians and Gynecologists’ Committee on
Practice Bulletins—Obstetrics, Committee on Genetics,
and Society for Maternal-Fetal Medicine 2020).
Currently, the American College of Obstetricians and
Gynecologists (ACOG) recommends offering all preg-
nant people NIPT screening for aneuploidies (e.g., sex
chromosomal characteristics and trisomy 21, 13, and
18, commonly known as Down syndrome), regardless
of genetic risk or reproductive age. Noninvasive
screening is cost-effective (Ohno et al. 2013) and
reduces procedure-related pregnancy losses (Fairbrother
et al. 2016), compared to invasive diagnostic proce-
dures, such as amniocentesis or chorionic villus sam-
pling. Considering the clinical benefits, NIPT is
increasingly being implemented as part of routine
prenatal care screening in the US. However, as a result
of these advances in reproductive genetic technology,
there is a need for more empirical research on the
ethical and social implications of NIPT among pop-
ulations underrepresented in scientific research, includ-
ing Black women with genetic conditions, such as
sickle cell disease (SCD) (Ravitsky et al. 2021; Thomas
et al. 2023), which is the primary focus of this study.
Scientific advancements for NIPT utilization aims
to permit safe in-utero screening for SCD and
β-thalassemia disease in the fetus through cf-DNA
(Erlich et al. 2022; van Campen et al. 2020; Westin
et al. 2021, 2022). NIPT for SCD screening technology
© 2024 The Author(s). P ublished with license by Taylor & Francis Group, LLC.
CONTACT Shameka P. Thomas [email protected] School of P ublic Health, Harvard University, Boston, M A, USA.
Supplemental data for this article can be accessed online at https://doi.org/10.1080/23294515.2024.2302996.
*Current affiliation: The Ohio S tate University, C ollege of M edicine, C enter for Bioethics, Biomedical Education and Anatomy.
https://doi.org/10.1080/23294515.2024.2302996
This is an Open Access article distributed under the terms of the C reative C ommons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unre-
stricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting
of the Accepted M anuscript in a repository by the author(s) or with their consent.
KEYWORDS
Noninvasive prenatal testing;
Black women; sickle cell disease;
reproductive health equity

2 S. P. THOMAS ET AL.
is in experimental stages and not yet approved by the
US Food and Drug Administration (Welcome to Unity
n.d., 4). However, it is commercially available in
CLIA-approved laboratories (Clinical Improvements
Amendments Act of 1988) and expected to be used in
clinical settings across the US (UNITY Carrier Screen—
Clinical Test—NIH Genetic Testing Registry—NCBI
n.d.; Cutts et al. 2019; van Campen et al. 2019). Critical
gaps, however, exist regarding how Black women with
genetic conditions negotiate decision-making during
prenatal screening, while also navigating the possible
advances of NIPT for SCD in the fetus. Since Black
women are disproportionately affected by SCD and are
underrepresented in genetic research on NIPT (Thomas
et al. 2023), this qualitative study examines Black wom-
en’s attitudes, perspectives, acceptability, and willingness
to participate in NIPT screening. To our knowledge,
this is the first empirical NIPT study to systematically
engage Black women with and without SCD in the US
context.
Methods
Study design
Forty (N = 40) semi-structured interviews were con-
ducted virtually with Black women (19 with SCD; 21
without SCD) from June 2021 to January 2022. Table
1 presents the demographic characteristics of the par-
ticipants. We purposefully included Black women
across all reproductive statuses (e.g., no children by
choice, pregnancy loss, infertility, or birth mother) to
assess a broad range of perceptions of NIPT’s utility
and its potential advancement in screening for fetal
SCD. The inclusion criteria were women between the
ages of 18 and 51 years, self-reported as Black, and
with or without SCD. Pregnant women were excluded
during data collection to maintain a hypothetical
stance as the core part of our qualitative strategy.
However, we created space for study participants to
reflect on any prior pregnancies and prenatal experi-
ences during the interview process. Each recruited
individual underwent a screening survey to determine
their eligibility to participate in the study. Each par-
ticipant completed a demographic survey and a
semi-structured interview which lasted between 60
and 90 min.
This qualitative study draws extensively from phe-
nomenology, which focuses on the premise that
patients are individuals, not cases or variables, who
have an experiential world and lived experience
(Charon 2006; Murphy et al. 2017). This approach
to collecting women’s narratives requires researchers
to allow patients to use their own language to
describe clinical phenomena and gain a more com-
plex understanding of their medical preferences and
decisions in the context of their social lives.
Conducting phenomenological interviews provides
an opportunity to engage patients deeply rather than
minimize their clinical encounters with a singular
focus, such as the basic or routine mechanics of
their illness experiences.
Interview guide and clinical vignette
The interview guide presents a clinical vignette (see
Online Appendix A), which was designed by our
internal research team and reviewed by our external
clinical consultants. These experts include a study
nurse, genetics counselor, hematologist, and an
obstetrics-gynecology (OBGYN) physician specializing
Table 1. Characteristics of study participants.
Study P articipant, CharacteristicsSCD (n = 19) No SCD ( n = 21)
Average Age 35.79 31.29
Maternal S tatus
Yes 7 10
# of Children 8 22
No 11 11
Pregnancy L oss 1 –
Genotype
HbSS 13 N/A
HbSC 5 N/A
HbSβ+-thalassemia 1 N/A
Race [self-reported]
AA and/or B 17 21
Afro-Latinx 1 –
Afro-Caribbean (Haiti, T rinidad,
Tobago, P anama)
– –
African (Ghanian, Nigerian) 1 –
Family H istory/P lace of Origin
[self-reported]
US-Based/US -Born 10 12
Caribbean 4 3
Central America 1 –
Africa 3 1
Multiple 1 2
Unreported – 3
Gender (Women), S exual
Orientation
Heterosexual 19 16
Pansexual 0 1
Lesbian /or Bisexual 0 1
Unreported – 3
Insurance S tatus (P roxy for SES)
Private/Employer-provided 11 14
Public/M edicaid 8 6
No Coverage – 1
Education L evels (H ighest L evel
Indicated)
High School Diploma or
Equivalent
2 2
Some C ollege 6 6
Associate’s or Bachelor’s Degree5 5
Master’s Degree 5 6
Professional Degree 1 1
Doctoral Degree – 1

AJOB Empirical Bioethics 3
in high-risk pregnancies and sickle cell disorders. The
interview guide was developed based on themes iden-
tified in the literature review related to prenatal care,
maternal health, social experiences, sickle cell disease,
and genetic technology assessment. First, we sought
to measure pre- and post-knowledge of the current
use of NIPT among the study participants. We admin-
istered a baseline assessment of the participant’s cur-
rent knowledge of NIPT and then exposed them to
the ACOG NIPT patient education materials (2020)
to assess their viewpoints (see Online Appendix B).
The ACOG patient education materials used as a part
of our interview protocol are based on the current
use of NIPT to screen for trisomy 13, 18, and 21
(most commonly known as Down syndrome) in the
US. The patient education materials were used (1) to
expose our study participants to material that is cur-
rently being disseminated by a national organization;
and (2) to elicit patient perceptions about NIPT-based
health conditions.
The clinical vignette was designed as part of the
interview guide (see Online Appendix A) to provide
study participants with a hypothetical scenario to
examine their perceptions of NIPT for fetal SCD
screening. The purpose of the clinical vignette was
to examine how the participants would advise a
hypothetical patient on NIPT decision-making
(Ulrich and Ratcliffe 2007). The clinical vignette
involved a hypothetical story of a Black woman
living with SCD who was seven weeks pregnant
when receiving NIPT test results for her fetus,
potentially having SCD. The study participant
advised the hypothetical patient, allowing our
research team to examine whether and how these
views aligned with their own beliefs and percep-
tions. Additional decisions to consider after receiv-
ing NIPT results involved: (1) considering more
invasive testing for definitive, invasive SCD diag-
nosis, which could increase the chances of preg-
nancy loss; (2) opting to keep NIPT’s predictive
screening results without further invasive diagnostic
testing; and/or (3) deciding on early termination
of the fetus without further noninvasive screening
or invasive testing. Although all pregnant women
with NIPT results are offered these options, we are
particularly interested in understanding how these
options affect Black women with SCD.
One of the challenges of prenatal screening is the
lack of a standardized interpretation of the results
(Skotko et al. 2019). We exposed each participant to
the ACOG NIPT patient education materials at base-
line, which explains the concepts of “false positives”
and “false negatives.” The clinical vignette was framed
using language that patients conventionally hear when
receiving results, as recommended by our external
team of clinical consultants.
Data analysis
Using an inductive analytical approach, data were
analyzed using NVIVO 12 qualitative software to
organize the responses from the interview transcripts
(About NVivo, n.d.). The initial coding process was
conducted by ST and RW, who coded separately
using a codebook and then iteratively compared the
codes and notes to merge into one master coding
file. Our team of three researchers (ST, RW, and TR)
met periodically to identify the patterns and themes
in the data. The data were dichotomized into two
broad groups: SCD and non-SCD, which included
four subgroups: (1) SCD women with biological chil-
dren, (2) SCD women without biological children,
(3) non-SCD women with biological children, and
(4) non-SCD women without biological children.
Audio recordings and field notes were reviewed to
cross-reference thematic points and capture addi-
tional nuances.
Ethical approval, recruitment, and informed
consent
The NIH Institutional Review Board (IRB) approved
this study as exempt (IRB 000415). We recruited par-
ticipants from SCD advocacy organizations. However,
to capture a wider range of respondents, we relied
substantively on respondent chain sampling to recruit
more study participants who did not frequently engage
with SCD advocacy organizations. Overall, it should
be noted that this study was conducted virtually during
the pandemic and consent was obtained verbally.
Results
Study participants
Forty Black women (N = 40) across the US participated
in this study. Table 1 illustrates the sociodemographic
characteristics of the study participants, highlighting
the diversity of Black women at the national level.
For the purposes of this analysis, we did not obtain
the sickle trait carrier status of all the participants;
thus, we did not report differences related to carrier
status in this analysis. Our results capture patients’
perceptions of NIPT’s current ability to screen for

4 S. P. THOMAS ET AL.
conditions such as Down syndrome, and these per-
ceptions were used to understand fetal screening
for SCD.
Figure 1 illustrates our model conceptualizing the
lived experiences of Black women with and without
SCD who also navigate their reproductive healthcare
across the US healthcare system (Roberts 1997). We
argue that focusing on Black women’s reproductive
health narratives is important for promoting repro-
ductive equity in the context of advances in NIPT.
Thus, we need to ethically consider how Black women
with genetic conditions negotiate and navigate
life-altering decisions related to predictive screen-
ing tests.
The results and quotes refer to the predictive value
of NIPT and the advancement of NIPT’s potential to
screen for SCD in utero. The results below include
perspectives captured in the patient’s own words
across three categories: (1) pre-NIPT educational
material exposure, (2) post-NIPT educational material
exposure, and (3) perceptions after the clinical vignette
scenario.
Category one: Pre-NIPT educational material
exposure
NIPT’s main concern should be safety for the mother
and fetus. We examined how respondents described
the meaning of NIPT and NIPT for fetal SCD at
baseline. Some respondents had general knowledge
about NIPT, particularly respondents who gave birth
after 2011 (when NIPT became clinically available
in the US) and mentioned having received NIPT
during their first or second trimester during prenatal
care. Regardless, we defined baseline knowledge as
the respondent’s prior knowledge of NIPT at the
beginning of the interview, without our research
team prompting NIPT’s clinical definition and/or
without offering exposure to NIPT educational
material from our interview guide. At the beginning
of the interview session, we asked, “What does
noninvasive prenatal testing sound like and/or mean
to you?”
Noninvasive means that it’s not going to impact the
fetus or the child that one person is carrying.
~Respondent H: Mother, SCD-Group
That my child will be safe, that my fetus would be
safe, you know, my baby would be okay. That’s always
the main concern, especially as a mother—especially
if it’s your first time being a mother—you want to
know that you’re taking every precaution to bring
your child into this world as healthy as possible, not
have any—you know, any issues, any complications
during your pregnancy. So, anything that will kind of
lean towards that. ~Respondent B: Mother, Non-SCD
Group
Something that’s outpatient….and by that, I mean,
does not put the mother or child at risk. It causes
minimal pain and after effects. Yeah, I think the
flashing word for me is risk factors. So, for me, some-
thing that is minimally invasive has the least risk fac-
tors but it’s still effective. ~Respondent A No Children:
Non-SCD Group
Category two: Post-NIPT educational material
exposure
Perceptions of NIPT results as predictive. After
exposing the respondents to the NIPT Educational
Material (Online Appendix B) from our interview
guide, they discussed their reactions to the predictive
value of NIPT results. Most respondents were
expressive about the predictive value of NIPT
screening, particularly as it relates to the potential
advancement of NIPT screening for fetal SCD. The
respondents shared their perceptions of the predictive
aspects of NIPT screening results, such as negotiating
how predictive results would affect women currently
living with SCD.
…this does not mean your child has this disease
either way. This is a predictive value, like—yes, the
risk is greater if this is positive, but that still doesn’t
confirm that [SCD] is what your child has.
~Respondent J: Mother, SCD Group
Figure 1. Conceptual model connecting NIPT , prenatal care,
and SCD with the intersectional importance of examining Black
women’s perceptions and health experiences.

AJOB Empirical Bioethics 5
Personally, just from what I’ve just heard about
[NIPT], I personally don’t really like it. I would say
that because it really doesn’t tell you anything. The
positive or negative, either one is just predictive…I
don’t like that the results are pretty much based on
maybes and not definite positive or definite negative.
~Respondent E: Mother, SCD Group
NIPT predictive results are still useful for persons
with and without genetic conditions. A respondent
from the non-SCD group, who grew up as a witness
and caretaker of family members with SCD, discussed
the usefulness of such predictions. Although this
respondent acknowledged the limitations of the NIPT
predictive results, she nevertheless opted for more
invasive testing for a more definitive diagnosis. The
respondent described requesting amniocentesis during
her previous pregnancy and relying on diagnostic
reproductive genetic technologies.
[NIPT] would be a useful option before…more inva-
sive testing, although, because it’s predictive, I…would
have gone for…definitive testing, regardless of what
[NIPT] results were. ~Respondent C, Mother with
SCT, Non-SCD Group
NIPT predictive results are still a stressful option for
persons with and without genetic conditions. Another
respondent from the non-SCD group, who had a child
with SCD, had an opposing perspective on the utility
of the NIPT. She did not perceive the screening results
as “useful,” but perceived them as stressful. This
particular respondent also shared that her lived
experiences with fertility and pregnancy were already
challenging, and thus she was curious if receiving
such screening results would further prevent her from
choosing to enjoy her pregnancy. This respondent also
confirmed that she eventually gave birth to her first
child (without SCD) and later to a second child (with
SCD).
The options are stressful. I wouldn’t want to do it. I
want to be able to just enjoy my pregnancy. And I
definitely would not want further testing. Respondent
J, Non-SCD Group
Category three: Clinical vignette reactions and
responses. Our clinical vignette captures the story of
a hypothetical patient, a Black woman with SCD, who
was seven weeks pregnant when she received “false-
positive” NIPT results for SCD in the fetus. In
alignment with the ACOG NIPT Education Material
(Online Appendix B), we based the hypothetical
patient’s optional choices on the following: (1)
considering more invasive testing for a definitive,
invasive SCD diagnosis, which could increase the
chances of pregnancy loss; (2) opting to maintain the
NIPT’s predictive results without further invasive
diagnostic testing; and/or (3) deciding for early
termination of the fetus without further noninvasive
screening or invasive testing.
Our clinical vignette allowed us to provide all
respondents (both SCD and non-SCD groups) with
an opportunity to react and respond to the NIPT’s
potential to screen for fetal SCD in a hypothetical
scenario. A respondent perceived the material as lim-
iting, noting that the hypothetical patient had limited
choices. She recommended that the hypothetical
patient should still assume that the fetus will have
sickle cell disease without putting herself at risk for
further invasive testing.
Negotiating the predictive assumption that the fetus
is going to have sickle cell disease.
[the hypothetical patient] doesn’t really have too great
of options here…I would just say continue on in the
pregnancy without the invasive procedure with the
assumption that the baby is going to have sickle cell.
~Respondent F: Mother, Non-SCD group
After clinical vignette exposure, another respondent
reflected on her lived experiences regarding the
restriction of birthing choices because of an SCD
diagnosis. This is an important concern for Black
women, who already face limited and poor-quality
reproductive healthcare options in US hospitals. The
respondent was also unclear as to whether the screen-
ing results for SCD, even in a hypothetical situation,
would further restrain her birthing choices because
she was considered high-risk.
I wanted a midwife…but they wouldn’t accept me.
The midwives—the nursing centers I talked to; they
didn’t accept me because it was high risk. And so,
they—I guess, they didn’t want that liability. And I
didn’t like the fact that I was automatically catego-
rized as high risk just because I had a diagnosis of
sickle cell. it shouldn’t just be a blanket diagnosis.
~Respondent K: Mother, SCD Group
Issues with NIPT’s current framing of sickle cell
disease as an “abnormality.” One respondent from
the SCD group (see below) described how it did not
matter whether her child had SCD. This is not to say
that the respondent was apathetic about her child
having a genetic condition. Rather, the respondent
did not subscribe to the framing of SCD as an
“abnormality,” particularly given the notion that she
also has SCD and still describes herself as living a
functional and capable life. This respondent applied

6 S. P. THOMAS ET AL.
the clinical scenario to her own lived experiences with
SCD.
So, like, when I was pregnant with my oldest son, I
was offered amniocentesis—you know, and I didn’t
want to do it just because I knew it was a risk factor
to it, and I didn’t care one way or the other if he had
sickle cell. I knew it was a risk that I was taking
when I got pregnant, and I just didn’t want the test.
~Respondent H: Mother, SCD Group
Shared lived experiences, yet divergent perceptions of
NIPT utility. The majority of respondents who were
mothers from the SCD group may have commonalities
in their lived experiences. Despite these commonalities,
respondents had divergent perceptions of the utility
of NIPT screening for SCD. In other words, our
results revealed that despite sharing common lived
experiences such as being Black women, mothers,
and/or having SCD, it cannot be assumed that
individuals with these similarities hold similar views
on reproductive genetic technology. This is a very
important result in our study because it not only
disentangles the conventional homogenization of Black
women in empirical NIPT studies but also captures
the breadth and depth of patient perceptions that are
often underrepresented.
Below, we highlight the contrasting viewpoints on
prenatal genetic technology among women who share
similar life experiences.
In favor of NIPT screening for SCD
I would want to know definitely…because [SCD] is
not something you want to see someone go through—
you do not want to see your child go through.
~Respondent V: Mother, SCD Group
Opposed to NIPT screening for SCD
what’s the point? I mean, what are they trying to
achieve; it’s going to affect the parents more than any-
body, so I just am curious to know what is there to
gain by…the medical world having this information.
~Respondent Z: Mother, SCD Group
Despite wide-ranging views on NIPT, respondents
(from both the SCD and non-SCD groups) expressed
heightened challenges around clinical decision making
for Black women due to historical and ongoing
adverse experiences in the US healthcare system.
These realities persist irrespective of NIPT advance-
ments for SCD.
Respondents from both groups expressed their
awareness of reproductive health inequities beyond
the clinical use of the NIPT.
I think this is a topic that deserves a great deal more
spotlight than it gets and is emerging as problematic
but has historically and contemporarily been prob-
lematic for a very long time. I don’t think that you
will meet any Black woman who [didn’t] either have
their own experience or have heard of an experience
from another Black woman in her circle that doesn’t
include some really difficult stories of mistreatment,
malpractice, or medical negligence. ~Respondent A:
No Children, Non-SCD Group
I have a strike against me as a Black person. Another
strike as a woman…and then sickle cell. The burden
and mistreatment during labor and delivery.
~Respondent Z: Mother, SCD Group
I’ve heard testimonies of other…African American
women, who did not have sickle cell who experienced
those [same] types of biases… I did actually do a
consultation with the other doctor that my O.B. had
partnered with and he allegedly had sickle cell knowl-
edge. But when I sat with him to do the consultation,
it was about five minutes long. It was literally five
minutes long. And I asked him, I said, "So, what do
you think I should do differently than a traditional
person who’s pregnant?" And he didn’t really have
much to share. The only difference was that I came to
the doctor more often…there was no different treat-
ment…it was just more monitoring…and jump
through these extra hoops. ~Respondent K: Mother,
SCD Group
Discussion
Need for increased empirical research to assess
Black women’s barriers and concerns around
NIPT
Black women have not been prioritized in the empirical
NIPT research (Thomas et al. 2023). In the larger con-
text, SCD is a major life-threatening genetic condition
(Power-Hays and McGann 2020), in which pregnancy
has been associated with exacerbating SCD pain crises
(Smith-Whitley 2019). SCD disproportionately affects
Black populations, and Black women with SCD are six
to ten times more likely to die from pregnancy-related
complications. Those women who become pregnant are
inevitably placed in high-risk prenatal categories
(Boakye et al. 2021; Elenga et al. 2016), which supports
our finding that reproductive choices are limited for
women living with SCD. Indeed, NIPT’s potential
expansion to screen for SCD in prenatal cfDNA has
been reported to be “a promising new technology” that
can screen for prenatal results, without requiring pater-
nal screening or blood samples from the biological
father (Westin et al. 2022), but more critical research
is needed for what this means specifically for Black

AJOB Empirical Bioethics 7
women’s mental health and reproductive choices. The
development of NIPT technology to screen for SCD
using cfDNA is expected to reduce the potential harm
to the mother and fetus (Gerovassili et al. 2006; van
Campen et al. 2020). In the US, invasive tests such as
amniocentesis and chorionic villus sampling are the
current prenatal tests used to definitively diagnose SCD,
which also increase the risk of procedure-related preg-
nancy loss (Bianchi 2015; Gerovassili et al. 2006).
Advancements in NIPT have revealed ethical and social
implications that should be increasingly examined, par-
ticularly as NIPT utility is increasing. Our results illus-
trate that further research is needed to elucidate how
minoritized patients with multiple identities assess
NIPT utility and what decisions they should consider
regarding the use of this prenatal screening method.
Important to consider reproductive choices amid
NIPT screening and its ethical complexities
One of the challenges, for example, with NIPT’s potential
advancement in screening for SCD is whether the results
will broaden or constrain birthing choices for women
with genetic conditions. Based on our results, although
fetal screening for SCD relies on blood samples using
cell DNA, our study participants highlighted that these
predictive screening measures can create additional stress
and psychological harm for Black women who are
already navigating high-risk pregnancies. Thus,
decision-making processes can still be psychologically
invasive, which is a serious ethical concern when repro-
ductive choices are further constrained for Black women
with genetic conditions. This is particularly important
for Black women, who simultaneously navigate the lived
experiences of race and racism while also navigating
racialized genetic conditions such as SCD. In other
words, as Black women in the US disproportionately
face serious maternal morbidity and mortality from pre-
ventable circumstances (Adams and Thomas 2018;
Thomas 2022), we must consider the ethical complexities
surrounding regulating genetic technology for SCD. We
also delineate, through normative and empirical bioethics
methods, how reproductive decisions are made based
on predictive results from screening tests in the context
of a healthcare system that fails to meet the needs of
populations constrained by structural inequities.
Reproductive health disparities have worsened,
severely impacting the lived experiences of Black
women in the US (Thomas 2022), and genetic tech-
nological advancements must meet the needs for fun-
damental health equity to emerge. This is evident
through the additional complexities that Black women
face regarding lack of access to quality healthcare ser-
vices, racial discrimination, implicit and explicit bias
in clinical encounters, and residential segregation (Bell
et al. 2006; C. A. Collins and Williams 1999; ProPublica
and Montagne 2017). Thus, people with lived experi-
ences as minoritized individuals move through con-
strained contexts (either by society or illness). This
means that options after the return of NIPT results are
not just about informed consent or individual
decision-making regarding the pregnancy. Rather,
reproductive choices (made before or after genetic
screening) are an extension of the social and political
environment, which can either increase or decrease
well-being, longevity, and quality of life (Cazenave
1979). We argue that neglecting to capture this nuance
may result in a well-intended and noninvasive proce-
dure being perceived by Black women with and without
genetic conditions as socio-psychologically invasive.
For ethical considerations, NIPT advancements
require deeper inquiries to advance reproductive
equity, such as: How might the lived experience of
racial discrimination influence Black women’s percep-
tions of NIPT? How might Black women’s reproductive
choices, including that of early termination be restricted
in post-Roe vs. Wade era? How does having a high-risk
prenatal diagnosis due to SCD further impact Black
women’s choices after receiving NIPT results? How
might anti-Black racism in scientific research and
healthcare, explicit or implicit, influence Black women’s
NIPT decision-making? Notably, it is unclear whether
advances in prenatal screening results for SCD will
be beneficial and/or inflict harm on a medically vul-
nerable population facing serious social constraints.
Bioethical considerations as NIPT advances to
screen for SCD using cell-free DNA
Given the significant and well-documented health ineq-
uities affecting Black women’s reproductive health as
well as the overlap for people living with and affected
by SCD, our study underscores the need for additional
bioethical considerations. Relatedly, what needs to be
acknowledged in bioethical discourse is the lack of inter-
disciplinary agreement on the impact of NIPT on Black
women with genetic conditions. For instance, there is
consensus across scientific fields regarding the existence
of maternal and child health disparities, but a lack of
consensus on how advances in NIPT screening will mit-
igate or exacerbate health disparities among Black
women. This lack of synergy, perhaps as advances in
NIPT increase, further affects the psychological and
social experiences of Black women’s reproductive

8 S. P. THOMAS ET AL.
healthcare more broadly. Our results further highlight
the need for a deeper NIPT discourse and analysis
related to the moral experiences, dilemmas, and realities
of minoritized individuals and communities plagued by
structural injustice (Fletcher, Ray, et al. 2022). Based on
our results, we gained additional insight from patients
to ethically frame language that better aligns with the
lived experiences of SCD, specifically in regards to fram-
ing SCD as a genetic abnormality. For example, if SCD
patients do not use such language to describe SCD as
an abnormality in their everyday lived experiences, then
this has broader implications for framing NIPT SCD in
clinical and scientific industries.
To advance NIPT screening equity among Black
women, we recommend the following: First, there is
a need for an expanded reproductive ethics framework
that amplifies how NIPT advances might restrict
informed and autonomous reproductive decision-making
for Black women with chronic conditions, including
Black women with SCD (Fletcher et al. 2021). Second,
we need to critically acknowledge the lived experiences
of Black women with and without SCD, particularly
the complex intersections of anti-Black racism,
social-classism, gender-based violence, medical oppres-
sion and debilitating health statuses in the context of
NIPT advances (Fletcher, Thomas, et al. 2022; Thomas
2022). Third, we must consider that empirical research
on NIPT predominantly enrolls White women (Chetty,
Garabedian, and Norton 2013; Fletcher, Thomas, et al.
2022; Thomas et al. 2023). In other words, we need
more studies that include, if not oversample, Black
women to understand the possible effects of NIPT
uptake on ongoing reproductive health disparities
while also examining what contributes to minoritized
patients’ lack of confidence in the healthcare system
(Sederstrom and Lasege 2022). Genomics research,
furthermore, fundamentally ought to institutionally
prioritize reproductive bioethics related to understand-
ing the varied lived experiences of Black women with
and without genetic conditions. Thus, this work has
important implications for expanding reproductive
ethics discourse and praxis to center Black women in
normative and empirical scholarship by conceptually
aligning with justice-oriented frameworks, such as
intersectionality, anti-Black racism, and constrained
choice theory in the context of NIPT (Bird and Rieker
2008; Collins 2008; Crenshaw 2017).
Strengths and limitations
One of the major strengths of our study is the large
number of interviews conducted (N = 40), which
captured a wide variety of perspectives highlighted by
Black women in the US. This is a strength because
it also attempts to mitigate the portrayal of Black
women as a monolithic group in empirical NIPT stud-
ies. Additionally, this contributing factor distinguishes
our research process by ultimately aiming to promote
anti-Black racism by centering Black women’s repro-
ductive health narratives in scientific data (Adams
and Thomas 2018; Thomas et al. 2021). Indeed,
because categorizing Black women into homogeneous
social groups often fails to capture their intersectional
identities and diverse-lived realities.
Even during the COVID-19 pandemic, recruitment
efforts and response rates were relatively high.
Although this was not a clinical study, we observed
that Black women desired to participate, helping
researchers understand the intersection between SCD
and reproductive healthcare. This is contrary to the
notion that Black patients are reluctant to participate
in scientific studies because of mistrust (Thomas 2022;
Wilson 2022). Many Black women research partici-
pants desire to share their experiences to inform the
development of new reproductive technologies and
ultimately reduce the burden of health inequities in
their communities.
The limitations include the fact that we focused
solely on SCD vs. non-SCD group comparisons and
did not include other clinical and social identity
groups in this analysis (e.g., sickle cell trait). Ongoing
analysis of our dataset will inform future research
directions and translational approaches.
Conclusion
Now more than ever, examining the lived experiences
of race, racism, gender-based violence, medical oppres-
sion, socioeconomic class discrimination, and racial-
ized conditions such as SCD is critical when examining
NIPT decision-making. Assessing Black women’s per-
ceptions of NIPT utility can further help identify
potential areas for genetic counseling, intervention
strategies, and improvements in reproductive health-
care for historically minoritized groups. This requires
a call to action on the part of researchers to ethically
engage more Black women in research to dehomog-
enize the narrative of a single lived experience.
As NIPT advances to screen for SCD, reproductive
equity must also advance. Ultimately, we hope that our
study underscores the need to prioritize empirical stud-
ies that investigate Black women’s perceptions before,
during, and after clinical encounters, particularly as
NIPT screening for fetal SCD reaches the clinical

AJOB Empirical Bioethics 9
market. Investigating the nuances within the perceptions
of patients regarding NIPT and NIPT’s potential for
advancing fetal or SCD screening can offer critical
opportunities to alleviate the severity of constrained
choices and expand reproductive equity. Bioethicists
and Ethical, Legal, and Social Implications (ELSI) schol-
ars are uniquely positioned to lead research at the
intersection of new genomic technologies and maternal
and child health to advance reproductive health justice.
Acknowledgments
The authors would like to acknowledge the study participants
who shared their lived experiences and stories during data
collection. We also thank our internal laboratory research
team, which worked selflessly to collect and analyze qualita-
tive data during the COVID-19 pandemic. We would also
like to acknowledge our external clinical consultants who
provided feedback on our interview guide and the clinical
vignette. We are truly grateful for the opportunity to make
this contribution to understand the critical intersections of
sickle cell disease and prenatal care for Black women with
and without genetic conditions in the United States.
Disclosure statement
The authors report no conflict of interest.
Funding
This work was funded in part by the Intramural Research
Program, National Human Genome Research Institute of
the National Institutes of Health (Z1AHG200394 Bonham).
This work was also supported in part by the National
Human Genome Research Institute of the National Institutes
of Health under award number K01HG011495-01 and the
Greenwall Faculty Scholars Program in Bioethics awarded
to Faith E. Fletcher. The perspectives expressed in this arti-
cle are those of the authors. No statement in this article
should be construed as an official position of the National
Human Genome Research Institute, National Institute of
Health, or Department of Health and Human Services.
ORCID
Shameka P. Thomas http://orcid.org/0000-0002-5225-0090
Faith E. Fletcher http://orcid.org/0000-0001-8075-6112
Rachele Willard http://orcid.org/0000-0001-7643-0216
Tiara Monet Ranson http://orcid.org/0009-0008-7039-0629
Vence L. Bonham http://orcid.org/0000-0002-3649-5442
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Open Access
BMC Pregnancy and Childbirth
Patient perspectives on noninvasive prenatal
testing among black women in the United
States: a scoping review
Shameka P. Thomas
1,2
, Madison A. Keller
2,3
, Tiara Ranson
2,4
and Rachele E. Willard
2*

Abstract
Advances in reproductive health technologies such as noninvasive prenatal testing (NIPT) are changing the landscape
of prenatal care and maternal health. NIPT, made clinically available in the United States (US) in 2011, is a screening
test that utilizes cell-free DNA (cfDNA) to detect for aneuploidies and genetic characteristics in fetal DNA. In Sep-
tember 2020, the American College of Obstetricians and Gynecologists (ACOG) recommended NIPT for all pregnant
patients regardless of age or risk factors. We examined peer-reviewed, empirical studies published from January 2011
to February 2022, assessing NIPT studies with patient perspectives in the US and what is known about how empiri-
cal studies include Black women. Our scoping review draws from PubMed (with advanced MeSH search options)
and Scopus databases for advanced scoping review, with 33 articles meeting our criteria. Empirical studies on NIPT
show patient perceptions range across ve themes: 1) accuracy / safety, 2) return of results, 3) patient knowledge,
4) informed consent, and 5) perceptions among minoritized groups (with perceptions of race and gender as a social
demographic intersection). Additionally, among the 15 studies that included that Black woman in their study sample,
none measured the perceptions of Black women with genetic conditions. Bridging this knowledge gap is critical
because NIPT is becoming increasingly accessible across the nation and is being developed to screen for additional
genetic conditions, such as sickle cell disease. Ultimately, NIPT researchers need to go to greater lengths to examine
the patient perspectives of Black women with and without genetic conditions.
Keywords NIPT, Cell-free DNA, Black women, Pregnancy, Patient-perspectives, United States
Background
Advances in reproductive genetic technologies such as
non-invasive prenatal testing (NIPT) are changing the
landscape of prenatal healthcare in the United States
(US) and across more than 50 countries [1, 2]. NIPT,
made commercially and clinically available in the US in
2011, is a novel genetic screening test utilized for detect-
ing aneuploidies and genetic characteristics in fetal DNA
(e.g., sex chromosomal characteristics and / or trisomy
21, 13, and 18). Developers of NIPT are currently test-
ing approaches using cell-free fetal DNA to screen for
additional genetic conditions, such as sickle cell disease
(SCD) [3, 4]. NIPT’s capability to screen for these genetic
conditions would reduce the over-utilization of invasive
tests (e.g., amniocentesis and chorionic villus sampling)
which are used to diagnose certain genetic conditions.
Invasive tests are not only higher in costs, but also asso-
ciated with increased susceptibility to procedure-related
pregnancy-loss [3, 5]. As of September 2020, the Ameri-
can College of Obstetricians and Gynecologists (ACOG)
*Correspondence:
Rachele E. Willard
[email protected]
1
School of Public Health, Harvard University, Cambridge, USA
2
National Institutes of Health-National Genome Research Institute,
Bethesda, USA
3
Louisiana State University-School of Medicine, Baton Rouge, USA
4
University of Washington-Seattle, Seattle, USA

Page 2 of 9Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183
recommended NIPT as standard, routine prenatal care in
the US to reduce reliance on invasive prenatal tests and
because it is deemed as clinically bene cial for pregnant
people of both high-risk and low-risk prenatal status [2].
Now more than ever, it is the time to ask critical ques-
tions about how researchers are examining the patient
perspectives of NIPT in the US. Our guiding premise was
to investigate which aspects of empirical-based NIPT
studies researchers include when assessing patient per-
spectives, with an intentional focus on minoritized popu-
lations such as Black women. Black women are identi ed
as a historically vulnerable group in the US due to inter-
secting social factors, such as racism, sexism, and class-
based discriminations [6, 7]. us, our research scope is
two-part: 1) an assessment of patient perspectives from
empirical studies; and 2) an evaluation of how research-
ers examine the demographic of Black women across
NIPT study samples. We consider these two-parts as
interconnected, particularly since understanding empiri-
cal studies on a national level is contingent to measuring
how researchers investigate marginalized demographics.
e relevance for this investigation, specically regard-
ing who (or what) is missing across empirical-based
NIPT studies, is the key factor that distinguishes our
scoping review in the eld of prenatal genetic technology
and reproductive medicine. A recent qualitative review
on NIPT perspectives among pregnant people, fam-
ily members, and partners showed that majority agree
with NIPT utilization as a proli c technology and thus
appreciate NIPT’s safety compared to invasive tests [1].
Findings further showed that women also expressed dis-
satisfaction with how NIPT knowledge is disseminated
during clinical encounters. In this regard, patient’s con-
cerns were related to the limited details in the informed
consent process for NIPT routinization prior to consent-
ing to participating in its usage [8]. ough both these
studies were substantive, they only had results from
majority White women in highly-educated groups from
high-income countries. us, we are curious to know
what results such as these would mean for historically
vulnerable populations, such as Black women, who are
also navigating a high-income country like the US, but
generally have less access to quality reproductive health-
care across the national and state levels [6].
Since there has not been a single US-based scoping
review that captures how studies incorporate Black
women’s perspectives of NIPT, this study sought to
bridge that gap. is is necessary because pregnant
women often express having anxiety after receiv-
ing NIPT results, which are merely predictive (e.g.,
false-positive or false-negative) and receiving these
NIPT results in the early stages of pregnancy was also
found to be a contributing factor in adverse prenatal
care experience [9 ]. Farrell and colleagues (2014) con-
ducted a qualitative study on NIPT perspectives (which
included a high percentage of Black women in their
study sample) and found that patients desire additional
NIPT education on the return of results, speci cally in
terms of uptake, cost of second opinions, and insurance
coverage. us, we aim to explore the variance among
Black women (as a non-monolithic group) by aiming
to dive deeper into the types of Black women incorpo-
rated into empirical-based NIPT studies at the national
level.
Methods
Our scoping review utilizes the Joanna Briggs Insti-
tute (JBI) guideline and the PRIMSA extension of scop-
ing reviews [10–13]. e PRISMA extension of scoping
reviews (PRISMA-ScR) guided our checklist [12], cou -
pled with the JBI guidelines. e JBI has nine tenets for
conducting a scoping review, which include: identifying
the research question, de ning the inclusion and exclu-
sion criteria, developing the search strategy (e.g., routes
for study selection, data extraction, and evidence), evi-
dence selection, evidence analysis, evidence extraction,
presentation of results, summary of the search process,
and establishing conclusions as it relates to addressing
the study aims [13].
Eligibility criteria and information sources
PubMed (with advanced MeSH search options) and Sco-
pus databases were thoroughly searched to access empir-
ical-based NIPT studies (see Fig. 1). Our rationale for
using these two databases is that PubMed
®
includes bio-
medical literature from MEDLINE, life science journals,
and online books with more than 34 million citations
and is the primary medical literature database. Scopus
is an interdisciplinary database that includes more than
240 disciplines, including social scienti c based studies
that can speak to non-clinical studies on patient percep-
tions of noninvasive prenatal testing. We recognize that
a limitation of the study is that other databases could be
searched, however we believe these two databases will
capture most of the articles. e date restriction was set
between January 2011 (the year NIPT was rst commer-
cially advertised and clinically utilized in the US) to Janu-
ary 2022.
e Boolean string of our key words were ?NIPT? OR
?NIPS? OR ?cell-free-DNA? OR ?perspectives.? ese
words were broadly related to NIPT, so as not to miss any
relevant empirical-based studies. en we set an exclu-
sion to extract all non-US studies from our broad key-
word search strategy.

Page 3 of 9 Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183

Specic electronic search strategy
As per PRISMA guidelines [12], our complete search
strategy is listed in step-by-step process. Step one focuses
on our research aim, which our research team had sev-
eral analytical discussions to narrow our objections. Step
two involved the identi cation and screening process of
the pertinent studies. Step three draws upon a standard-
ized review for charting the data. Below we describe our
steps in detail.
Step 1: Research Aim
Prior to developing our research question and study aims,
our scoping review was based on a series of inductive
observations that guided our speci c electronic search
strategy. Our research questions involved: 1) What is
known about the patient perspectives of empirical NIPT
studies at the national level in the US? and 2) What is
known about the demographics of Black women included
in those empirical NIPT studies, if so? We divided our
study aims into two parts to address these questions. Part
one aimed to examine the types of patterns that NIPT
researchers most frequently identify as the key themes
at the national level. Part two aimed to examine if there
are any Black women included in these studies, and if
so, what is known (e.g., demographics) about the Black
women who are included. us, part two of our aims was
the centerpiece of our scoping review to provide a robust
comparable analysis to part one’s inquiry.
Step 2: Identication of Relevant Studies
e identication of relevant studies was conducted
through two search engines involving PubMed and Sco-
pus with MeSH advanced search options. e screen-
ing process of the title and abstract were conducted in
duplicate, involving three researchers (ST, MK, and TR)
and the senior research library at our institution. Phase
one involved review of both the title and abstract. Phase
two involved the full reading of the article if it met our
screening parameters. We narrowed our search using a
Boolean string of key words speci c to NIPT, NIPS and
cfDNA (acronyms available after references).
Figure 1 illustrates our scoping review utilizing these
systematic search options. We began with our search
in PubMed and SCOPUS. We restricted our key word
search to three terms NIPT, NIPS, and cfDNA which
Fig. 1 Flow Chart of the Electronic Search Strategy of Empirical Articles on Patient Perspectives on NIPT (with regard to racial demographics) in the
United States, 2011–2022

Page 4 of 9Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183
yielded 17, 550 total articles. Based on this total, we
excluded all articles that were non-empirical (e.g., com-
mentaries), published before 2011, published outside of
the US, and articles that did not focus on NIPT, NIPS, or
cfDNA. Inclusion was based on empirical articles that
focused solely on perspectives of NIPT, NIPS, and cfDNA
published after 2011 in the US. We yielded 33 total arti-
cles based on these inclusion and exclusion parameters.
Within these 33 articles, we excluded articles that did not
include race demographics, which left us with 21 total
articles. Since our premise was to scope for empirical
studies of NIPT that included Black women in their study
samples, we then identi ed 15 of those 21 articles that
included Black women.
Step 3: Charting the Data
Drawing from Arksey and O’Malley’s (2005) steps
for scoping review process, we designed a standard-
ized format to chart our data that provides a system-
atic process for reliability and validity [11]. ere are
two reasons why we did not specify if these empirical
studies are either qualitative or quantitative: 1) some of
the studies had approaches of mixed-methods; and 2)
we did not want the methodological approach to over
shadow the importance of the key themes. Our ration-
ale for this is that the themes are necessary for the eld,
regardless of either methodological approach. us, we
did not exclude articles on the basis of their respective
methodological approach.
Our review process was divided into two phases.
Phase one included screening titles and abstracts. Phase
two involved a robust review of each article in EXCEL.
We dissected each article across ve categories includ-
ing: study population, aims of the study, methodology,
outcome measures, and important results. An addi-
tional category was created for capturing what we
noticed about what is missing from NIPT studies. We
provide a ow chart (see Fig. 1) that illustrates steps
one, two and three of our methodology and scoping
review process.
Results
irty-three empirical studies met our criteria (see
Fig. 2); and among these articles, patient perceptions
of NIPT ranged across ve themes, involving: 1) accu-
racy and safety, 2) return of results, 3) patient knowl-
edge 4) informed consent, and 5) perceptions among
minoritized groups (with perceptions of race and gen-
der as a social demographic intersection) [14– 46].
More speci cally, the fth theme showed that although
21 studies included race as a demographic to describe
study populations [14– 34], only 15 studies highlighted
Black women as potential recipients of genetic screen-
ing [14– 28]. Of these 15 articles, none of those studies
measured the perceptions of Black women with genetic
conditions, such as sickle cell disease.
Theme 1: perception of accuracy and safety
Twelve articles discussed patient’s and provider’s views
on the accuracy and safety of NIPT [14–22, 29, 35,
36]. Across these articles, NIPT was perceived as safer
when compared to invasive methods (e.g., amniocente-
sis or CVS). NIPT results are predictive. Predictive, in
this case, means that NIPT results can only screen for
genetic conditions, not determine them denitively [2,
5]. us, patient perceptions of accuracy of these predic-
tive test results were viewed as sucient for uptake of
Fig. 2 Results of NIPT Articles across Key Themes

Page 5 of 9 Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183

NIPT for all pregnant women, but contingent on patient’s
preference.
Theme 2: return of NIPT results
Twenty-one articles discussed perceptions of NIPT’s
return of results [15, 18–25, 29–40]. Of all the articles,
this theme was the most signi cant. Patients expressed
both positive and negative views on NIPT results as it
relates to clinical decision-making, particularly since the
results are predictive. ese articles also illustrate that
although patients expressed that knowing predictive
results (in the rst trimester of pregnancy) are bene cial
for preparing to have an infant with a potential genetic
condition, it also increased stress for pregnant people
during the remainder of the pregnancy. Perceptions of
negative results were also of concern, due to the results
only being predictive, thereby positioning the patient
to have a brief timeframe to decide for next steps (e.g.,
uptake for diagnostic invasive testing and / or early ter-
mination of fetus).
Theme 3: patient knowledge
Twelve of the articles showed results for patients want-
ing to have increased knowledge of NIPT [14, 22–26, 36,
37, 41–44]. In these articles, patients wanted to know
more about how NIPT could mitigate their reproductive
health concerns. ese articles also showed that there are
concerns about how NIPT knowledge is disseminated
between both physicians and genetic counselors as well
as the standardization of NIPT knowledge. Understand-
ing how patients perceive NIPT knowledge as well as the
dissemination of NIPT knowledge is critical for increas-
ing patient-provider communication as well as increas-
ing NIPT uptake. Without critical assessment of what
the patient knows about NIPT, no matter how bene cial
the NIPT is (or becomes), it can inherently run the risk of
being perceived as unethical.
Theme 4: informed consent
Seventeen of the articles discussed how patients per-
ceived informed consent [16, 19, 21, 25, 27–30, 32–34,
37, 38, 42, 44–46] and how patients receive pertinent
details for conducting the screening test. Informed con-
sent is closely related to patient knowledge of NIPT, but
it is not a replacement for informed consent. In other
words, informed consent and patient knowledge should
not be conated. Informed consent happens during the
clinical encounter, whereas patient knowledge happens
primarily before the clinical encounter. Across these arti-
cles, however, this key dierence was not explicitly stated.
is is another critical aspect for advancing the literature
surrounding the ecacy of NIPT and informed consent.
Ultimately, when there are increased articles on percep-
tions of informed consent, the next inquiry becomes:
who are the patients in these study samples and how
nuanced are their baseline knowledge levels compared to
the general population?
Theme 5: perceptions among minoritized groups,
emphasizing black women
Unlike most scoping reviews on reproductive genetic
technology, our study provides results on the number
of empirical articles that included racial demographics
among minoritized groups. In this regard, we focused
on Black women included in these studies (see Fig. 3). Of
the thirty-three empirical articles, 21 articles observe the
race of participants [14–34]. However, of those 21 arti -
cles, fteen of the articles included Black women in their
study samples as representative of patients and NIPT
recipients [14–28], rather than as health professionals
(genetic counselors or physicians) providing NIPT and
cfDNA screening. We determined the average of Black
women represented in the fteen studies was 12.34%.
is percentage was based on comparing the Black sub-
populations to overall average of empirical NIPT articles
on patient perceptions among women. Please note none
of the articles out of that 12.34% speci cally clari ed the
number of study participants who were both Black (self-
reported) and female (as self-identifying), and thus we
did not want to over-assume.
e fteen articles showed demographics of the gen-
eral population (see Fig. 3) that can be appliable to the
Black women patient subset population: Age, Education,
Income, Insurance, Religion, Prior Screening, Parental
Status, Pregnancy Status, Gravidity, Marital Status, and
Genetic Condition. All fteen articles included age as a
demographic [14–28]. irteen articles included educa -
tion [14–19, 21, 23–28], but only four articles included
income as a demographic [14, 15, 18, 24]. Two articles
mentioned insurance as a demographic to describe their
sample population [22, 26]. Four articles mention religion
as a demographic [14, 15, 23, 24]; four articles included
parental status [14, 15, 22, 24], and four articles included
marital status as demographics of the general popula-
tion [16, 18, 24, 26]. When it came to painting a picture
of the women undergoing prenatal screening - incorpo-
rating pregnancy related demographics – seven articles
included pregnancy status [16, 17, 19, 21, 22, 25, 27], six
articles included gravidity [16, 19–21, 27, 28], and seven
articles included prior NIPT screening as a demographic
characteristic [16, 19, 21, 23, 25, 27, 28]. However, of the
fteen articles that included Black women as a subset
population, there were zero articles that observed pres-
ence of a genetic condition as a demographic.

Page 6 of 9Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183
Discussion
Of the 33 articles that met our criteria, fteen of the arti-
cles include Black women in their study samples. How-
ever, the challenge is how researchers are going about the
data collection process, particularly in the eld of health
disparities. In other words, these results further chal-
lenged how the eld views demographic data, not only on
national-level NIPT studies, but also what is known about
how minoritized populations, such as Black women with
and without genetic conditions are represented in sample
sizes.
eme ve is the most important nding of our
research, which revealed that of the fteen articles,
none of the articles discussed Black women with genetic
conditions. For example, although Black women’s per-
spectives on NIPT are included in studies between
2011 and 2022, we identi ed that Black women (with
genetic conditions) are not substantively incorporated
into the study samples of NIPT articles. Since NIPT
has been made clinically available in the US since 2011
this reveals a critical gap. Meaning, it is a critical gap
that literature on NIPT has no data on patient percep-
tions of NIPT among groups with genetic conditions. In
other words, NIPT researchers have neglected to view
genetics conditions as a demographic category that can
impact not only the lived experience, but also how this
limitation of NIPT knowledge misinforms reproductive
health discourse. is also raises concerns about how
these limitation in the eld perpetuates missing data in
the eld, particularly on NIPT and genetic conditions.
Failing to be inclusive of these demographic details fur-
ther contributes to methodological inequities, such as
framing and routinizing NIPT for all pregnant people,
while not having sucient data on patient perceptions
among the most marginalized groups of people across
the nation.
NIPT studies often disseminate data that is seemingly
representative of the national population. However, our
results show that this data is largely based on White,
female respondents who are over-represented across
study samples, with very few empirical studies on the
patient perceptions of minoritized populations who have
varied lived experiences of comorbidities or pre-existing
health conditions. is does not mean that none of the
Black women did not have genetic conditions, such as
sickle cell disease. Rather, it means that the researchers
did not focus on genetic conditions as a demographic
category.
is demographic gap perhaps occurred for a variety
of reasons, ranging from researchers not being socialized
or trained to view a genetic condition as a demographic
category or simply due to time or budget constraints.
Often times, demographics are conventionally por-
trayed as collecting characteristics on age, education
level, racial / ethnic background, insurance status and so
forth. However, one of our key ndings is that research-
ers of NIPT studies also need to collect data on genetic
conditions as a demographic category. Collecting data on
genetic conditions as a demographic not only broadens
research on reproductive inequities, but also it allows for
a more nuanced understanding of patient populations.
is is particularly important when conducting studies
on advanced reproductive genetic technologies, such as
NIPT, as well as among Black women who are not a mon-
olithic group. Either way, scoping the research landscape
of what is known and unknown about NIPT patient
Fig. 3 A Tally on the Type of Demographic Information Collected on Black Women in Study Samples in the Included Studies

Page 7 of 9 Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183

perceptions regarding minoritized groups and Black
women with and without genetic conditions remains a
major gap in the literature.
For the advancement of reproductive equity, it is
critical to connect these inquires to broader social and
ethical implications. For example, the strength of our
study design provides an opportunity to see how NIPT
research is conducted at the national level with women
from various groups and backgrounds, while providing
comparative data that disentangles Black women from
being a mere monolithic category. If we were not inten-
tional about our study design in this way, not only would
we miss an opportunity to report on racial gap areas, but
also areas of medical gaps (e.g., sickle cell disease) and
the impact of these similarities and dierences across
NIPT studies for a more robust scoping analysis.
e discussion of our results generates more ongoing
considerations for the eld. For example, how do current
US-based studies examine the NIPT perceptions of Black
women (with and without genetic conditions), particu-
larly now that ACOG has recommended NIPT as routine
prenatal care as of September 2020? Who are the women
included in clinical trials for NIPT advancement? Are
women (who are susceptible to high-risk pregnancy and
/ or considered medically vulnerable) suciently incor-
porated into ongoing NIPT studies? If so, do these stud-
ies include Black women with genetic conditions, such as
sickle cell disease? ese inquiries are needed in the eld
of reproductive health disparities as it relates to genetic
and precision medicine.
Expanding the literature on reproductive equity, spe-
ci cally regarding race, racism, and the advancement of
research on NIPT, researchers need to ask themselves
two questions: 1) do my demographic variables include
“race” and “gender” as separated and / or intersected?
and 2) are these categories of “race” and / or “gender”
self-reported categories or based on the lived experience
of perceived-racial categories (e.g., self-reported Latina,
but perceived as Black / Afro-Latina) [47, 48]? Cur-
rently used racial demographics have limitations, and to
advance understandings of racial equity the call to action
must be to disentangle the overly-assumed “race” catego-
ries in the eld of reproductive health (e.g., self-reported
race and/or perceived race). is is important because
researchers often utilize racial demographics without
careful considerations of the historical and present-day
implications that impact the lived experience of race, rac-
ism, and gender-based racism.
Strengths and limitations
e strengths of our study are discovering the lack of
inclusion on the intersectional dynamics of reporting
racial demographic of Black women. For example, due
to the intersectional identity of “Black” and “Women,”
it is unclear if the quantitative articles (that did include
Black women as study participants) used interaction
variables or separate demographic variables for race and
gender. In other words, we observed empirical articles
that included demographics on race [14–34] and gen -
der [14–25, 27–37, 39, 42, 44], but we did not want to
incorrectly assume that these categories were intersected
subsamples. In this regard, when it comes to the intersec-
tional aspects of race and gender, researchers must go to
more intentional lengths to include Black women as an
intersectional demographic. Another strength is the two-
part study design that not only allowed for us to measure
NIPT at the national level, but also to narrow down our
focus to see how researchers go about their study sam-
ples on Black women more speci cally.
Our study is not without limitations. First, we recog-
nize that our scoping strategy is restricted to two major
databases (PubMed and Scopus), as additional databases
may have reputable studies on the patient perceptions
of NIPT innovation. Also, we acknowledge that there
may be NIPT research that is being conducted, but not
yet published. For example, the initial (baseline) restric-
tion our search was set between January 2011 and Janu-
ary 2021. en, there was an eight-month window period
between when we conducted our nal search between
January 2011 to November 2021 (to cross-check our arti-
cle numbers). us, additional articles could have been
published in other databases since our baseline search
(from fall 2021 to spring 2022). In that window period,
however, we noticed no additional articles on NIPT
patient perspectives were published, which strengthens
the reliability and validity of our article totals. However,
even if additional articles were published that capture our
study?s scope, we argue that it would not be a signi cant
increase in the number of studies to refute our claims. In
other words, while more research is needed on the NIPT
perceptions of Black women (with and without genetic
conditions), the eld is still far behind the mark at the
national-level.
Conclusion
Conducting a scoping review on US-based NIPT studies
provides a substantial opportunity for the eld of repro-
ductive health and genetic technology. Examining Black
women’s visibility (or lack thereof) in NIPT studies will
help researchers to identify potential areas for interven-
tion and improvements in standard prenatal healthcare,
speci cally for populations (with genetic conditions)
who are underrepresented and vulnerable to structural
racism.
While NIPT is a genetic technology for fetal screening,
we continue to fail women (particularly those susceptible

Page 8 of 9Thomas et al. BMC Pregnancy and Childbirth (2023) 23:183
to institutional marginalization) by neglecting to under-
stand how it eects their reproductive autonomy in the
social world [48]. Examining patient perceptions among
a wide variety of groups with and without genetic con-
ditions is the eective next step to advance ecacy and
expand reproductive health equity.
Abbreviations
NIPT Noninvasive prenatal testing
US United States
Cf-DNA Cell-free DNA
SCD Sickle cell disease
ACOG American College of Obstetricians and Gynecologists
Acknowledgements
The authors would like to acknowledge the Bonham Lab - Health Disparities
Unit of the National Human Genome Research Institutes and librarian Dera
Tompkins who diligently assisted with the reference searches.
Authors’ contributions
S.P.T. and M.K. wrote the main manuscript text; T.R. contributed to the results
section and nalized the preparation of Figs. 1, 2 and 3; R.W. contributed to
data analysis and main manuscript editing. All authors reviewed the manu-
script. The author(s) read and approved the nal manuscript.
Funding
Open Access funding provided by the National Institutes of Health (NIH). S.P.T.
and R.W. are corresponding authors who share joint aliations of the National
Institutes of Health-National Human Genome Research Institute’s which
provided publication support for this article.
Availability of data and materials
This study is a scoping review, thus no datasets were generated or analyzed
during the study phase. Therefore, providing details on data repository are not
applicable. However, the datasets used and/or analyzed during the current
study are available from the corresponding author(s) on reasonable request.
Declarations
Ethics approval and consent to participate
Not applicable.
This study did not involve data on humans and/or human subjects. Thus, ethi-
cal approval and consent to participate in this study were not required.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Received: 30 August 2022 Accepted: 2 February 2023
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Abdallah et al. BMC Public Health (2025) 25:1568
https://doi.org/10.1186/s12889-025-22731-2
BMC Public Health
*Correspondence:
Ashley J. Buscetta
[email protected]
Full list of author information is available at the end of the article
Abstract
Background COVID-19 vaccine efficacy was determined by the participation of individuals from diverse
backgrounds in clinical trials. While these trials recruited participants with chronic conditions, little is known about
how sentiments of mistrust affected the views of vaccine trial participation. The aim of this study is to examine the
relationship between self-reported institutional medical mistrust and views on the importance and utility of COVID-19
vaccine research participation among adults living with sickle cell disease (SCD) in the United States.
Methods This cross-sectional study is part of a larger longitudinal study aimed at understanding the lived
experiences of individuals living with SCD in the United States during the COVID-19 pandemic. Data from the first
wave of the longitudinal study, collected June– December 2020, were used for the analyses (n = 185). Two single-
item variables ascertaining the utility of participation in clinical trial research for COVID-19 vaccines were examined.
Institutional medical mistrust was measured utilizing a modified medical mistrust index. Multivariable binary logistic
regression models were utilized, adjusting for applicable sociodemographic, behavioral, and clinical variables.
Results A majority of study participants agreed with statements regarding beliefs about the importance of
participating in vaccine research (71.4%) and the utility of vaccine research for family and self (60.0%). Findings
indicated that having any level of worry of COVID-19 infection was significantly associated with greater agreement
with the importance of participating in COVID-19 vaccine research (OR = 3.41, 95% CI 1.346–8.641, p = 0.01) and
higher agreement with the utility of vaccine research for themselves and their families (OR = 3.54, 95% CI: 1.332–9.403,
p = 0.01), after adjusting for covariates. Agreement with the utility of vaccine research participation was also found to
be associated with higher SCD severity (OR = 1.26, 95% CI: 1.043–1.537, p = 0.02). In contrast, higher medical mistrust
was inversely associated with agreement of this statement (OR = 0.44, 95% CI: 0.222–0.89, p = 0.02).
Measuring (Mis)trust in the age of COVID-19:
viewpoints of vaccine clinical trial
participation among individuals living
with sickle cell disease
Khadijah Abdallah
1,2
, Kiana Amini
1
, Hasmin C. Ramirez
1
, Madison Keller
1,3
, Diba Seddighi
1
, Marilyn S. Baffoe-
Bonnie
1,4,5
, Shameka Thomas
1,6
, Vence L. Bonham
1
and Ashley J. Buscetta
1*

Page 2 of 9Abdallah et al. BMC Public Health (2025) 25:1568
Background
The COVID-19 pandemic in the United States required
a response which was led by government and healthcare
sectors. The rapid spread of the disease was paralleled
by the rapid development of vaccines and therapeutics.
Initially, limited supply, availability, and access to vacci-
nations were driving forces of vaccine uptake. As supply
eventually reached demand, it became more apparent
that some of the United States population was hesitant
and unwilling to accept the vaccine [1–4] and the intro-
duction of new boosters continues to be a factor contrib-
uting to inconsistent vaccine uptake. As of October 2023,
230 million people (69.5% of the total U.S. population)
completed their primary vaccination series, while only
56 million (17% of the total U.S. population) received a
bivalent booster dose [5].
Moving vaccines from bench to arm was accomplished
through rigorous research and willing clinical trial vac-
cine research participants. Many companies, govern-
ments, and academic research groups initiated and
continue to conduct vaccine trials in response to the
dangerous spread of novel variant strains of SARS-CoV-2
[6, 7]. Of importance has been successfully recruiting
participants who are representative of diverse clinical
populations, including individuals who are (a) high-risk
for infection (e.g., frontline workers, essential workers),
(b) high-risk for severe complication or death due to
COVID-19 (e.g., due to age and/or co-morbidities), and
(c) representative of racial, ethnic, and ancestral diversity
[8, 9].
Medical mistrust due to sociohistorical factors has
been a long-term barrier to trial participation and vaccine
uptake [10]. Mistrust has been defined as the “general
sense of unease or concern that a provider or [organi-
zation] may not act in a person’s best interest” [11]. The
prevailing sense of mistrust relating to the COVID-19
pandemic has had a notable impact on the U.S. public,
including affecting the behaviors of communities of color
[12–14]. This mistrust throughout communities of color
has been attributed to existing inequities that have been
magnified by the COVID-19 pandemic and a greater loss
of confidence in institutions [15–17].
Despite the growing body of literature examining the
national population’s mistrust of biomedical research and
institutions during the COVID-19 pandemic, there are
limited empirical studies that examine how the context of
living with a chronic illness may impact medical mistrust
of health care-related institutions [18–21]. We aim to
fill this gap by examining the relationship between insti-
tutional mistrust and views on vaccine research partici-
pation in a group of adults living with sickle cell disease
(SCD).
Sickle cell disease is a group of rare inherited red blood
cell disorders that can affect nearly every organ system in
the body and may result in a lower life expectancy [22].
The health complications associated with SCD put indi-
viduals living with this disease at higher risk of severe
complications and death due to COVID-19 [23]. In the
United States, SCD predominantly affects individuals of
African descent [22] and given the population’s well-doc-
umented experiences of racialized discrimination, SCD
is a strong case to explore the question of how mistrust
of biomedical research and/or government institutions
shape views towards COVID-19 vaccine research partici-
pation [24, 25]. Furthermore, the health care views, deci-
sions, and experiences of individuals living with SCD are
often understood and reflective of the historical mistrust
of biomedical research and government institutions that
exists within Black and African American communities
at large [26]. However, there are few studies that point-
edly examine mistrust within the context of living with
SCD [27, 28] and few on how mistrust affects clinical
research participation in this population [26, 29, 30].
The aim of this study is to examine the relationship
between self-reported institutional medical mistrust
and views on the importance and utility of COVID-19
vaccine research participation among adults living with
sickle cell disease (SCD) in the United States. We hypoth-
esize that medical mistrust will be significantly associated
with negative views towards COVID-19 vaccine research
participation among adults with SCD.
Methods
Study procedure and recruitment
This is a cross-sectional study that is part of a larger lon-
gitudinal study aimed at understanding the lived expe-
riences of individuals living with SCD in the United
States during the COVID-19 pandemic. Participants
were recruited through social networks, snowball sam-
pling, and previous enrollment in an ongoing SCD study
called the INSIGHTS Study (NCT02156102, approved
16/06/2014). Participants were first surveyed in June
2020, with four waves of data collection completed; the
final survey was administered April 2022. Inclusion cri-
teria for the study were: (1) adults aged 18 or older, (2)
diagnosis of SCD and knowledge of type of SCD, and (3)
Conclusions Our findings reveal that for individuals living with sickle cell disease, the worry of infection and the
severity of their individual disease were more important in shaping views towards vaccine research participation than
medical mistrust.
Keywords COVID-19, Institutional medical mistrust, Chronic diseases, Sickle cell disease, Vaccines, Clinical trials

Page 3 of 9Abdallah et al. BMC Public Health (2025) 25:1568
currently residing in the United States. The web-based
survey was administered using a Qualtrics platform,
through which each participant was provided a unique
URL survey link. Data collected for the first wave of the
study were utilized for this cross-sectional analysis. Data
collection occurred between June 2020 and December
2020 when the initial COVID-19 vaccines were still being
tested in clinical trials and considered for emergency-
use authorization by the FDA. A total of 185 eligible
individuals were included in this study. Study approval
was obtained through the National Institutes of Health
(NIH) Institutional Review Board for protocol number
20HGN125 (NCT04417673, approved 02/06/2020).
Outcomes
Two single-item variables with the aim of gathering
perspectives regarding participation in clinical trial
research for COVID-19 vaccines were used as our out-
come variables. Using a five-point Likert-scale ranging
from ‘strongly disagree’ to ‘strongly agree’, participants
were asked to report their level of agreement with the fol-
lowing two items: (1) “It is important for people to take
part in COVID-19 vaccine research” and (2) “Participa-
tion in COVID-19 vaccine research can help my family
and me”. Both items were adapted from the measure on
Perceptions of Participation in Clinical Research [31] and
were modified for COVID-19. For the purposes of this
study, responses were classified as either agreeing (agree
or strongly agree) with each outcome versus not seeing a
benefit (neither agree nor disagree, disagree or strongly
disagree).
Primary predictor variables: mistrust measures
The 21 items that constitute the medical mistrust mea-
sure were adapted from the Medical Mistrust Index, cre-
ated and validated by LaViest and colleagues [32]. Three
separate sub-scales to measure institutional medical mis-
trust in health care organizations, federal government,
and local/state governments were created, specifically
for the context of the COVID-19 pandemic. Each sub-
scale contains seven statements with which participants
were asked to choose their level of agreement, includ-
ing statements such as “My community has sometimes
been deceived or misled by [health care organizations /
the local and state government / the federal government]
regarding the COVID-19 pandemic” and “Mistakes are
common in [health care organizations / the local and
state government / the federal government] regard-
ing the COVID-19 pandemic”. Each statement utilized a
four-point Likert-scale, with responses ranging from one
(strongly disagree) to four (strongly agree). The level of
agreement for overall medical mistrust was measured by
the average score (range 1–4) for all 21 statements, with
higher values indicating a higher level of mistrust.
Additional predictor variables
Binary predictor variables included gender (female vs.
male), educational status (high school degree/some col-
lege vs. bachelor’s degree or higher), insurance status
(insured vs. uninsured), employment status (employed
vs. unemployed), marital status (not married vs. mar-
ried), and regular access to a healthcare provider (yes
vs. no). Worry of COVID-19 infection, described by the
question “During the past two weeks, how worried have
you been about being infected?”, was treated as a dichoto-
mous variable with responses grouped into any level of
worry (extremely, very, slightly, or moderately) vs. not
worried. Age was measured as a continuous variable.
Participants were asked to provide a self-reported history
of nine comorbidities (yes = 1, no = 0). SCD severity was
then measured by a composite score based on responses
with higher scores indicating higher levels of SCD sever-
ity (range 0–8) [33]. SCD genotype was also collected
to describe our population but was not included in final
analysis models.
Statistical analysis
Participant sociodemographic, behavioral, and clinical
characteristics were assessed using descriptive statis-
tics, including Chi-square test or Fisher’s exact test for
categorical variables and two-sample t-tests for con-
tinuous variables. Frequencies, or mean and standard
deviations (SD) for continuous variables, were identi-
fied for our outcome variables and independent covari-
ates. Missing data were treated using listwise deletion
and regression diagnostics were performed to exam-
ine outliers and influencers, including testing for model
validity (i.e., homoskedasticity, variance inflation fac-
tor/multicollinearity, studentized residuals). Sensitiv-
ity analysis followed the identification of two outliers,
which were removed upon ascertainment of influence.
After removing missing values and outliers, 185 individu-
als were included in final analyses. Multivariable binary
logistic regression models were utilized for the two
outcomes, adjusting for applicable sociodemographic,
behavioral, and clinical variables. Inclusion of covariates
in final models was based on a significant association
with each outcome during univariate diagnostic analy-
sis. Race was not included as a covariate in final models
due to majority of our sample population identifying as
Black/African American. Statistical significance for all
results were determined based on a p-value of < 0.05. All
statistical analyses were completed using SAS version 9.4.
Results
Descriptive univariate statistics are described in Table 1.
A majority of study participants agreed with state-
ments regarding beliefs about the importance of par-
ticipating in vaccine research (71.4%) and the utility of

Page 4 of 9Abdallah et al. BMC Public Health (2025) 25:1568
Total sample
N (%)
Views on importance of people taking
part in COVID-19 vaccine research
Views on the utility of COVID-19 vac-
cine research
Agree
N (%)
No Opinion/
Disagree
N (%)
p-value Agree
N (%)
No Opinion/
Disagree
N (%)
p-value
TOTAL 185 132 (71.4)53 (28.6)- 111 (60.0)74 (40.0)-
Age 0.33 0.62
Mean [Range] 36.6 [18–68]37.1 [18–68]35.4 [19–67] 36.9 [18–68]36.1 [19–67]
(SD) -10.7 -10.7 -10.7 -10.5 -11.1
Gender 0.17 0.01
Female 115 (62.2)78 (42.1)37 (20.0) 61 (33.0)54 (29.2)
Male 70 (37.8) 54 (29.2)16 (8.7) 50 (27.0)20 (10.8)
Genotype 0.88 0.29
HbSS 118 (63.8)84 (45.4)34 (18.4) 67 (36.2)51 (27.6)
HbSC 32 (17.3) 22 (11.9)10 (5.4) 19 (10.3)13 (7.0)
Other Genotype
a
35 (18.9) 26 (14.0)9 (4.9) 25 (13.5)10 (5.4)
Race* < 0.001 < 0.001
American Indian/Alaska Native 1 (0.6) - 1 (0.6) - 1 (0.6)
Black/African American 154 (85.6)108 (60.0)46 (25.6) 91 (50.6)63 (35.0)
Native Hawaiian/Pacific Islander2 (1.1) 2 (1.1) - 1 (0.6) 1 (0.6)
White 16 (8.9) 15 (8.3) 1 (0.6) 16 (8.9) -
Other
b
7 (3.9) 7 (3.9) - 2 (1.1) 5 (2.8)
Ethnicity* 0.81 0.96
Not Hispanic/Latino 160 (88.9)116 (64.4)44 (24.4) 95 (52.8)65 (36.1)
Hispanic/Latino 20 (11.1) 14 (7.8) 6 (3.3) 12 (6.7) 8 (4.4)
Income* 0.01 0.01
$59,999 or less 78 (43.8) 64 (36.0)14 (7.8) 53 (29.8)22 (12.4)
$60,000 or greater 100 (56.2)64 (36.0)36 (20.2) 56 (31.5)47 (26.4)
Education
High school Degree/Some College81 (43.8) 56 (30.3)25 (13.5)0.56 43 (23.2)38 (20.5)
Bachelor’s or Higher 104 (56.2)76 (41.1)28 (15.1) 68 (36.8)36 (19.5)0.09
Insurance Status 0.44 0.58
Insured 170 (91.9)120 (64.9)50 (27.0) 101 (54.6)69 (37.3)
Not Insured 15 (8.1) 12 (6.5) 3 (1.6) 10 (5.4) 5 (2.7)
Employment Status* 0.07 0.01
Employed 98 (55.7) 75 (42.6)23 (13.1) 67 (38.1)31 (17.6)
Not employed 78 (44.3) 50 (28.4)28 (15.9) 37 (21.0)41 (23.3)
Marital Status 0.32 0.19
Married 91 (49.2) 68 (36.8)23 (12.4) 59 (31.9)32 (17.3)
Unmarried 94 (50.8) 64 (34.6)30 (16.2) 52 (28.1)42 (22.7)
Healthcare Provider
c
0.1 0.46
Yes 173 (93.5)126 (68.1)47 (25.4) 105 (56.8)68 (36.8)
No 12 (6.5) 6 (3.2) 6 (3.2) 6 (3.2) 6 (3.2)
Worried about COVID-19 Infection
Any level of worry
d
155 (83.8)117 (63.2)38 (20.5)0.005 99 (53.5)56 (20.3)0.01
Not worried 30 (16.2) 15 (8.1) 15 (8.1) 12 (6.5) 18 (9.7)
Sickle Cell Disease Severity Score
Mean [Range], 2.9 [0–8] 3.1 [0–8]2.4 [0–6]0.02 3.3 [0–8]2.4 [0–7]< 0.001
(SD) -2 -2 -1.8 -2 -1.8
Table 1 Characteristics of sample population (N = 185)

Page 5 of 9Abdallah et al. BMC Public Health (2025) 25:1568
vaccine research for family and self (60.0%), specifically
in the context of COVID-19. The average level of medi-
cal mistrust was 2.9, with a score range of 1–4 (SD 0.60)
(Table 1).
It is important for people to take part in COVID-19
vaccine research.
The unadjusted model between the importance of par-
ticipating in COVID-19 research and medical mis-
trust was not statistically significant (OR = 0.71, 95% CI:
0.389–1.282, p = 0.25) (Table 2). Similarly, the association
for this relationship continued to be non-significant after
adjusting for relevant sociodemographic, behavioral,
and clinical variables (OR = 0.52, 95% CI: 0.257–1.067,
p = 0.07) (Table 2). Additionally, having any level of worry
of COVID-19 infection, specifically within the last two
weeks of study participation, was significantly associ-
ated with greater agreement with the importance of par-
ticipating in COVID-19 vaccine research, after adjusting
for relevant variables (OR = 3.41, 95% CI 1.346–8.641,
p = 0.01) (Table 2).
Participation in COVID-19 vaccine research can
help my family and me.
In the unadjusted model, each unit increase in medical
mistrust is associated with a 46% decrease in the odds of
agreeing with the utility of COVID-19 vaccine research
(OR = 0.54, 95% CI: 0.31–0.951, p = 0.03) (Table 2). This
association continued to be significant after adjusting for
relevant sociodemographic, behavioral, and clinical vari-
ables (OR = 0.44, 95% CI: 0.222–0.89, p = 0.02) (Table 2).
Additionally, higher self-reported worry of COVID-19
infection was significantly associated with higher agree-
ment with the utility of vaccine research for them-
selves and their families, after adjusting for covariates
(OR = 3.54, 95% CI: 1.332–9.403, p = 0.01). The adjusted
model also indicated that agreement with this viewpoint
was significantly associated with higher SCD severity
(OR = 1.26, 95% CI: 1.043–1.537, p = 0.02) (Table 2).
Discussion
Our study examined viewpoints of adults with SCD on
COVID-19 vaccine research participation prior to the
approval of vaccinations by the FDA and other regulatory
agencies. We examined two different outcomes pertain-
ing to (1) the importance of participation in COVID-19
vaccine research and (2) the utility of COVID-19 research
participation for people and their families. The first inves-
tigated individuals’ viewpoints regarding the importance
of people in general participating in vaccine research.
Findings revealed that individuals with any level of self-
reported worry of COVID-19 infection within two weeks
of participating in the study expressed greater agreement
with this statement. This relationship was maintained
when examining individuals’ viewpoints on the utility of
COVID-19 vaccine research participation for themselves
and their families. Furthermore, agreement with the util-
ity of COVID-19 vaccine research participation was also
found to be associated with higher SCD severity, while
higher medical mistrust was inversely associated with
agreement of this statement.
The urgency of this pandemic and our finding that
worry sentiments of becoming severely ill with COVID-
19 among individuals living with SCD can be understood
as the byproduct of individual-level vulnerability and per-
ception of risk that people living with severe chronic ill-
nesses may have. Individuals living with chronic illnesses
report heightened levels of pandemic-related worry and
self-perceived risk of severe infection compared to the
general population [34, 35]. Existing literature has pre-
dominantly emphasized the role of worry of COVID-19
infection as a predictor of vaccination willingness and
status, revealing that greater levels of worry are associ-
ated with more positive perceptions of the COVID-19
vaccine and increased vaccine uptake [36–38]. In 2020,
a study striving to understand vaccine propensity in the
U.S. found that shifting risk assessments on an individual
Total sample
N (%)
Views on importance of people taking
part in COVID-19 vaccine research
Views on the utility of COVID-19 vac-
cine research
Agree
N (%)
No Opinion/
Disagree
N (%)
p-value Agree
N (%)
No Opinion/
Disagree
N (%)
p-value
Medical Mistrust 2.9 [1.2-4] (0.5) 0.25 0.03
Mean [Range] 2.9 [1–4] 3.0 [1.9–3.9] 2.8 [1.2-4]3.0 [1.9-4]
(SD) -0.6 -0.6 -0.6 -0.5
a
Other genotype includes Hb Sß+-Thalassemia, Hb Sß0-Thalassemia, Sickle HPFH, Sickle Delta Beta (0) Thalassemia, Sickle HbO-Arab, Sickle HbE
b
Other includes: White/Hispanic or Other/Mixed
c
Do you have a doctor or nurse you usually see if you need a check up, want advice about a health problem, or get sick or hurt?
d
Any level of worry includes slightly, moderately, very, or extremely worried of infection
* Totals reflect complete data after the removal of missing responses.
Table 1 (continued)

Page 6 of 9Abdallah et al. BMC Public Health (2025) 25:1568
level, such as disease severity, can be a driving factor for
higher vaccine uptake within some communities [39].
Studies investigating worry of COVID-19 infection as it
relates to perceptions of research participation and util-
ity are minimal. Worry of infection has been cited as a
barrier to personal research participation in vulner-
able subgroups of Black/African American communities
due to increased fear of exposure to the virus in clinical
research settings, but overall perceptions of the impor-
tance and utility of the research remained positive among
these study populations [40, 41]. Our finding that medi-
cal mistrust was inversely associated with viewpoints on
the utility of COVID-19 vaccine research participation
further emphasizes the gap in understanding the role that
medical mistrust has on individuals living with a chronic
disease and their perceptions and decisions to participate
in clinical trial research on a grander scale.
While the historical context of unethical research per-
formed on communities of color is often cited as a cause
of high mistrust among individuals who identify as Black/
African American, our study findings present a different
narrative. Particularly, we found that the views of indi-
viduals living with sickle cell disease are fundamentally
tied to their concerns of risks posed by the COVID-19
pandemic, such as worry of infection and disease sever-
ity, more so than it being solely related to mistrust. Daly
and colleagues found that mistrust is correlated with
vaccine hesitancy in communities of color [42]. How-
ever, the authors also found that vaccine uptake among
Black and Hispanic communities increased over time at
higher rates than for White participants, further offering
new perspective to the discourse on hesitancy and mis-
trust among racial and ethnic minority communities [42].
Related to that study, our findings also illustrate how the
typical generalized discourse of sentiments of mistrust
within racial and ethnic minority communities fails to
capture the other considerations individuals may have in
participating in COVID-19 vaccine research, especially
Table 2 Unadjusted and adjusted multivariate regression models of independent variables and outcomes for vaccine research
viewpoints (N = 185)
Model 1: “Important for people to take part in
COVID-19 vaccine research”
Model 2: “Vaccine research will
help my family and me”
Unadjusted OR
(95% CI)
Adjusted OR
(95% CI)
Unadjusted OR
(95% CI)
Adjust-
ed OR
(95%
CI)
Medical Mistrust 0.71
(0.389–1.282)
0.52
(0.257–1.067)
0.54
(0.310–0.951) *
0.44
(0.222–
0.890) *
Gender
Female
a
– – – 1.62
(0.765–
3.419)
Income
$60,000 or greater
d
– 0.60
(0.257–1.408)
– 0.91
(0.403–
2.045)
Education
Bachelor’s Degree or Higher
c
– – – 0.77
(0.364–
1.618)
Employment Status
Employed
e
– 1.30
(0.580–2.920)
– 1.98
(0.89–
4.395)
Worried about COVID-19 Infection
Any level of worry
b
– 3.41
(1.346–8.641) *
– 3.54
(1.332–
9.403) *
Healthcare Provider
f
Yes
– 2.59
(0.705–9.532)
– –
SCD Clinical Severity – 1.18
(0.968–1.433)
– 1.26
(1.043–
1.537) *
* p-value < 0.05
a
Female vs. Male
b
Any level of worry includes slightly, moderately, very, or extremely worried of infection vs. Not worried
c
Bachelor’s or higher vs. High School or Some College
d
$60,0000 or greater vs. Less than $59,999
e
Employed vs. Not Employed
f
Do you have a doctor or nurse you usually see if you need a checkup, want advice about a health problem, or get sick or hurt? Response of Yes vs. No

Page 7 of 9Abdallah et al. BMC Public Health (2025) 25:1568
when faced with higher health risks. Therefore, consis-
tent with a growing perspective in the era of COVID-19,
nuance is required in the way we frame mistrust [43].
Furthermore, scholars are drawing more attention to how
the narrative of mistrust can place blame on individuals
from communities of color and excuse structurally-pro-
duced barriers that fail to provide access to vaccines and
antiviral therapies in underserved communities [44–46].
For example, scholars have found that while historical
mistrust may cause some hesitation about research par-
ticipation, if given the opportunity to learn more about a
clinical trial or research study, many individuals of racial
and ethnic minority communities would be open to par-
ticipating, especially if it would benefit their health, well-
being, or community [8, 47].
Thus, ongoing efforts to vaccinate hesitant individuals
call for a better understanding of the social, psychologi-
cal, and clinical factors associated with vaccine research
participation and uptake, especially among individu-
als living with chronic diseases like SCD. Furthermore,
given that the SCD population has unique experiences at
the intersection of race and illness, our findings build on
research that has found that the aspects of the SCD lived
experience, like pain and social identity, impact research
participation [48]. We identify additional considerations
that individuals with an underlying racialized medical
condition deem important, specifically how worry of
COVID-19 infection and disease severity impact views
towards vaccine research.
The study limitations include potential recruitment
bias as individuals without internet access were unable
to participate, and therefore, were not surveyed. Rather,
participants were recruited through a current NIH-
funded SCD study, advocacy groups, and social media.
As the study population contained a majority of highly
educated individuals living above the national poverty
level who had low disease severity scores, the view-
points of individuals with low socioeconomic status and
higher disease severity are missing. Since this was a self-
administered survey, veracity of participants responses
was assessed by response consistency. Additionally, this
study was limited by a small, non-random sample size of
185 participants living with SCD. While this challenges
the generalizability of our findings, it also allows for a
sharper exploration of the experience of living with a rare
and chronic disease during a pandemic. Finally, this study
is limited by the fact that the science, policy, and medi-
cine surrounding COVID-19 are fast-moving and have
inconsistently changed throughout the pandemic, spe-
cifically during the time of this study.
Conclusion
It is critical to assess the attitudes and sentiments of indi-
viduals living with chronic conditions on participation in
vaccine research. Individuals living with chronic diseases
face many challenges in managing their health outside of
a global pandemic. Chronic diseases like SCD pose chal-
lenges and risks throughout other crises, such as hous-
ing insecurity, food insecurity, and structural racism in
health care [49]. In the post COVID-19 pandemic era, we
seek to draw lessons on how to better prioritize and com-
prehensively measure the attitudes and views of individu-
als living with chronic genetic conditions in vaccination
research and uptake.
Abbreviations
FDA Food and Drug Administration
NIH National Institutes of Health
OR Odds ratio
SCD Sickle cell disease
SD Standard deviation
Acknowledgements
The authors would like to thank the participants for their time and willingness
to partake in this survey. The authors also acknowledge and thank S. Woolford,
PhD for statistical support.
Author contributions
KEA, AB, VB conceived the study and questionnaires. AB worked on data
collection and data review. HR, KA, and KEA carried out data analyses. KEA, KA,
HR, MK, DS, MB, ST, VB, and AB contributed to the write-up and critical review
of the manuscript. All authors also read and approved the manuscript.
Funding
Open access funding provided by the National Institutes of Health
This study was made possible in part by the Division of Intramural Research,
National Human Genome Research Institute grant number ZIAHG200394
(Bonham).
Data availability
The datasets generated and/or analyzed during the current study are available
from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
This study was conducted in accordance with the ethical principles of the
Declaration of Helsinki (https://www.wma.net/policies-post/wma-declara
tion-of-helsinki/ ) and approved by the National Institutes of Health (NIH)
Institutional Review Board for protocol number 20HGN125 (NCT04417673,
approved 02/06/2020)). Informed consent was obtained from all participants.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Author details
1
Social and Behavioral Branch, National Human Genome Research
Institute, National Institutes of Health, Bethesda, MD, US
2
Rollins School of Public Health, Emory University, Atlanta, GA, US
3
School of Medicine, Louisiana State University, New Orleans, LA, US
4
Department of Bioethics, National Institutes of Health, Bethesda, MD, US
5
Department of Sociology, Rutgers University, New Brunswick, NJ, US
6
Center for Bioethics, The Ohio State University College of Medicine,
Columbus, OH, US

Page 8 of 9Abdallah et al. BMC Public Health (2025) 25:1568
Received: 20 December 2023 / Accepted: 9 April 2025
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ARTICLE
Alternative prenatal care interventions to alleviate
Black–White maternal/infant health disparities
Crystal Adams
|Shameka Poetry Thomas
Department of Sociology, University of Miami
Correspondence
Crystal Adams, Department of Sociology,
University of Miami, 5202 University Drive,
Merrick Bldg, Room 120, Coral Gables, FL
33146, USA.
Email: [email protected]
Abstract
This paper attempts to forward the maternal health literature that
critiques standard prenatal care in the United States by drawing
on intersectionality, medicalization, and fundamental causation
theories. We argue that these theories deepen our understanding
of the maternal health experiences of Black women and can help
explain why alternative prenatal care interventions have value for
Black pregnant women. Alternative models of prenatal care, which
include the use of midwives, doulas, and group prenatal care, are
associated with equal or better health outcomes for infants and
mothers compared to the standard prenatal model in the United
States. We begin by drawing on these sociological perspectives to
identify gaps in the maternal health literature that is critical of
standard biomedical maternal health approaches. We then go on
to describe select alternative methods of prenatal care and then
provide a summary of the epidemiological literature as it relates to
sociodemographic trends in usage and the relative effectiveness of
alternative models compared to standard care. We conclude by
arguing that a joint, critical application of these three theories can
help scholars explain the utility of alternative interventions for
African American maternal/infant health and can inform policies
that aim to alleviate Black–White maternal/infant health disparities.
1|INTRODUCTION
The US ranks behind 25 OECD countries for infant mortality (MacDorman, Matthews, Mohangoo, & Zeitlin, 2014)
and has a maternal mortality rate that is higher than any other developed nation (Kassebaum et al., 2014). Women
complain of long waits, rushed visits, and mechanistic, impersonal care (Novick, 2009). In a context of high socioeco-
nomic and racial health disparities, low‐income and racial/ethnic minority women are even more vulnerable to the ill
effects of suboptimal care. African American women are particularly vulnerable, as they experience approximately
twice the infant mortality rate (Kochanek, Murphy, Xu, & Tejada‐Vera, 2016) and close to four times the maternal
mortality rate of non‐Hispanic women (Creanga et al., 2014). In a thorough review of racial/ethnic disparities in
obstetric outcomes, Bryant, Worjoloh, Caughey, and Washington (2010) found that non‐Hispanic Black women had
Received: 15 January 2017 Revised: 10 October 2017 Accepted: 11 October 2017
DOI: 10.1111/soc4.12549
Sociology Compass. 2018;12:e12549.
https://doi.org/10.1111/soc4.12549
© 2017 John Wiley & Sons Ltd.wileyonlinelibrary.com/journal/soc4 1of13

consistently worse pregnancy and maternal outcomes along various measures, such as fetal death, preterm birth,
maternal mortality, and maternal morbidity, than both non‐Hispanic Whites and other racial/ethnic minorities. The
authors concluded that prenatal care and social circumstances appear to be the strongest contributors to maternal
mortality. In her overview of trends in infant mortality, fetal mortality, and preterm birth, MacDorman (2011) deter-
mined that non‐Hispanic Black women are at the highest risk for these unfavorable birth outcomes. Moreover,
Tucker, Berg, Callaghan, and Hsia (2007) discovered that although there were no differences between Black and
White women in the prevalence of five specific pregnancy complications (preeclampsia, eclampsia, abruptio placentae,
placenta previa, and postpartum hemorrhage), Blacks were two to three times more likely than Whites to die from
them. Given that the US has the highest prenatal care costs in the world and is the most expensive place to give birth
(iFHP, 2015), its subpar maternal and infant health outcomes and high socioeconomic and racial maternal/infant
health disparities are striking.
As a response to low quality prenatal care, women (primarily White) are increasingly utilizing alternative models of
prenatal care as an adjunct to or replacement for traditional prenatal care. We definealternative models of prenatal care
as comprehensive methods of childbirth preparation that go beyond the standard model of prenatal care, which
involves regular one‐on‐one visits with an obstetrician at consistent, frequent intervals and culminates with a birth
in a hospital setting. Our definition encompasses methods that are comprehensive in scope—i.e., methods that focus
on the entire care experience for prenatal women. There are fewer comprehensive alternative strategies, such as
hypnobirthing, prenatal yoga, and meditation, that have become popular in recent years to aid women in various
aspects of the pregnancy experience. While many of these strategies are valuable techniques with demonstrated
benefits, our focus is on methods that involve the delivery of physical and/or emotional care throughout the
pregnancy process. We do not review the literature on birth centers as they represent a site of birth rather than a
prenatal care approach. While patients who choose to deliver in a birth center may use the comprehensive alternative
models discussed here, some may opt for a more traditional prenatal care approach that may involve, for example,
standard prenatal care visits with an obstetrician.
This paper draws on key sociological theories to argue that the prenatal care structure in the US disadvantages
pregnant women, particularly African Americans. It contends that alternative prenatal care interventions have greater
value for Black pregnant women than the standard prenatal care model. We begin by drawing on intersectionality
theory, medicalization theory, and fundamental causation theory to identify gaps in the maternal health literature
critical of standard biomedical maternal health approaches. Thereafter, we describe select alternative methods of
prenatal care and then provide a summary of the epidemiological literature as it relates to sociodemographic trends
in usage and the relative effectiveness of alternative models compared to standard care. In doing so, we identify
two primary dimensions by which alternative methods of prenatal care vary: caregiver type and one‐on‐one vs.
group‐based care. We regard midwives and doulas as two of the most important types of alternative caregivers that
can help reduce Black–White health disparities. We conclude by arguing that a joint, critical application of these three
theories can help scholars explain the utility of alternative interventions for minority women, particularly African
Americans, and can inform policies that aim to alleviate many observed racial maternal/infant health disparities.
2|SOCIOLOGICAL APPROACHES FOR THE STUDY OF AFRICAN
AMERICAN MATERNAL HEALTH
2.1
|Intersectionality: Understanding the multilayered maternal health experiences of
African American women
Intersectionality theory (Collins, 2002; Crenshaw, 1991), which recognizes that social constructs such as race, gender,
and class cannot be considered in isolation but rather cohere to reproduce social inequality, serves as an important
analytical tool for understanding African American women's multilayered maternal health experiences. The dominant
2of13 ADAMS AND THOMAS

feminist perspectives (Lupton, 2012; Martin, 2001; Rothman, 1984) in the critical maternal health literature have
acknowledged that the maternal health care system operates in a larger society that continues to situate men and
women in a hierarchical paradigm, socially and biologically. These scholars (e.g., Lupton, 2012) have argued that
medical discourse constructs women's bodies as treacherous territory, presenting pregnancy and birth as medical
dilemmas.
While many maternal health scholars critical of standard care (Roberts, 2014; Rothman, 1984) recognize that race
and class play an important role in shaping women's experience, by centrally focusing on gender, the literature has
largely failed to systematically examine the simultaneous effects of various social determinants of health on women.
While the dominant prenatal care model in the US fails to meet the needs of all women, minority women are partic-
ularly vulnerable to negative experiences in maternal care. Racial discrimination has been proffered as a major contrib-
utor to Black–White health disparities and has been shown to be associated with an increased risk for adverse infant
and maternal health outcomes (Collins, David, Handler, Wall, & Andes, 2004; Collins et al., 2000; Giscombé & Lobel,
2005; Giurgescu, McFarlin, Lomax, Craddock, & Albrecht, 2011; Mustillo et al., 2004; Rosenberg, Palmer, Wise,
Horton, & Corwin, 2002). There are three ways in which racial discrimination contributes to Black–White maternal
health disparities. First, racial discrimination often arises in the clinical prenatal care encounter. The third wave of
theListening to Motherssurvey, a national U.S. survey of women's childbearing experiences, (Declercq, Sakala, Corry,
Applebaum, & Herrlich, 2013) revealed that about one in five Black and Hispanic women reported poor treatment
from hospital staff due to their race, ethnicity, cultural background, and/or language. Second, racial discrimination
affects pregnant women outside of the clinical encounter. Based on data from maternal perceptions of exposure to
racial discrimination during pregnancy, Collins et al. (2004) concluded that racial discrimination could potentially lead
to very low birth weight among African American infants. Finally, as Lu and Halfon (2003) noted, racial disparities in
birth outcomes are not solely a consequence of differential exposure to racial discrimination during pregnancy. Rather,
they are the effects of differential exposures that occur throughout the life course.
Because legacies of discrimination endure, in order to identify the most appropriate health care for African
American women, it is necessary to situate African American women's maternal health experiences into a broader
sociohistorical context. Historically, portrayals of African American women in the broader society have been and
continue to be largely negative, involving pejorative images of Black women such as the“the mammy”figure,“the
jezebel,”and the“welfare‐queen”(Collins, 2002). The“welfare queen,”for example, is the hyper‐image of a Black
woman who refuses to work and illegally steals money from the government to live off the welfare system. The
Reagan Administration used this image to disparage those who utilized welfare (Gilliam, 1999). Thus, gender stratifi-
cation, racial discrimination, and low socioeconomic status oppress low‐income minority women, rendering them
disempowered in the overall U.S. healthcare system.
2.2|Resisting medicalization…or not: alternative prenatal care interventions to alleviate
Black–White maternal health disparities
Numerous scholars have documented the historical development of the medicalization of pregnancy and childbirth
(e.g., Barker, 1998; Oakley, 1980; Oakley, 1984). Major themes in analyses of medicalized birth concentrate on issues
of control over women's reproductive choices, the site of birth, and the use of medical technologies (Brubaker &
Dillaway, 2009). Feminists' critiques of medicalization (Davis‐Floyd, 2004; Leavitt, 1986; Martin, 2001; Oakley,
1984; Probyn, 1993) have noted that medicalization has involved a shift in approach from viewing pregnancy as a
natural process to framing it as a highly specialized and interventionist issue. Bringing pregnancy under the purview
of biomedical logic has translated into the removal of the social and personal experience of pregnancy that fails to
address the unique preferences of women (Oakley, 1984).
Maternal health scholars (Scamell, 2014) have identified risk discourse as an engine of the medicalization of
pregnancy. As Scamell (2014) noted, risk discourse has played a critical role in the conceptualization of childbearing
and childbirth in modern society. Medical professionals and the public at large treat risk designations and pregnancy
ADAMS AND THOMAS 3of13

diagnoses as taken‐for‐granted, and the birthing options for women diagnosed as high‐risk are restricted to medical
interventions performed by obstetricians (Simonds, Rothman, & Norman, 2007). With an emphasis on and an
expansion of risk terminology, birthing is constructed as pathological—a logic that is counter to the midwifery philos-
ophy of care, which conceives pregnancy and birth as a natural life process. However, as Rose (1981) famously argued,
pursuing a high‐risk strategy of prevention can result in the medical community's medical surveillance of an increasing
number of patients. A high degree of monitoring during pregnancy and birth is more likely to result in medical inter-
vention (Welch, Schwartz, & Woloshin, 2011). Low‐income women on Medicaid, a joint federal and state‐sponsored
program in the US that helps low‐income individuals pay for health care costs, are particularly susceptible to such
monitoring, as Medicaid does not typically cover alternative methods.
While maternal health scholars have contributed greatly to the understanding of the ways in which medicalization
has affected pregnant and birthing women, they have tended to portray natural childbirth as best for all women, have
understated the degree to which medicalization benefits women, and have neglected the ways in which women may
embrace elements of a traditional biomedical approach to pregnancy and childbirth. According to Brubaker and
Dillaway (2009), a strict adherence to the natural versus medical dichotomy fails to account for the complex variations
in women's pregnancy and birth experiences, and Brubaker (2007) has shown in her research on African American
teens' reproductive experiences that African Americans can embrace some facets of prenatal care while simulta-
neously resisting others. Women's preferences for their active involvement in pregnancy care decisions vary widely,
with some women preferring to be highly involved and others preferring a more passive role (Harrison, Kushner,
Benzies, Rempel, & Kimak, 2003). While an overemphasis in the US on risk and diagnosis may lead to the failure to
consider the many other ways in which physicians should tailor their treatment to their patients, it is not clear that
abandoning a risk‐based perspective would improve maternal and infant health. A natural childbirth with low medical
supervision and few medical interventions may not be best for some pregnant women, such as women who are preg-
nant with more than one child and those with severe health conditions. Thus, the degree to which women will resist
the dominant prenatal care model will vary depending on their preferences and physical, familial, and social situations.
2.3|Fundamental causation as an explanation for changing trends in the usage of
alternative models
Numerous studies on the social determinants of health have identified socioeconomic status and race as fundamental
causes for preventable health problems (Carpiano, Link, & Phelan, 2008; Link & Phelan, 1995; Phelan, Link, &
Tehranifar, 2010). The fundamental cause thesis, proffered by medical sociologists Link and Phelan (1995), argues that
health inequalities in mortality and morbidity are due to the unequal distribution of important resources, including
money, power, and knowledge, that are vital for maintaining and improving health. When new knowledge, technolo-
gies, and interventions related to the causes and effective treatment of disease become available, more privileged
individuals draw on their resources to avoid risk factors, take advantage of protective factors, and invest in treatments
to sustain or improve their health advantage (Link & Phelan, 1995). Less advantaged populations face resource
barriers that prevent them from acting in health enhancing ways. Multiple tests of the fundamental cause thesis
have yielded support for the theory (Chang & Lauderdale, 2009; Link, Northridge, Phelan, & Ganz, 1998; Phelan, Link,
Diez‐Roux, Kawachi, & Levin, 2004; Polonijo & Carpiano, 2013; Rubin, Colen, & Link, 2010; Wang, Clouston, Rubin,
Colen, & Link, 2012).
Maternal health scholars investigating alternative care methods have largely failed to engage with the fundamen-
tal cause perspective. As a result, they may succumb to narrowly focusing on gender, racial, or health care inequalities
and, thus, risk devising down‐or mid‐stream solutions that fail to focus on the multidimensional needs of women,
which include the biological, psychological, emotional, and social needs of pregnant and birthing women. Addressing
these multifaceted needs is even more important for low‐status individuals facing multiple types of resource dispar-
ities. As Lutfey and Freese (2005) demonstrated in their study of two diabetes clinics with different sociodemographic
profiles, the resources that could be considered compensatory are typically made available to those who need them
4of13 ADAMS AND THOMAS

the least (p. 1363). For example, the low rates of the use of midwives and doulas among African American women
reflect the constrained socioeconomic, cultural, and social choices that they face (Rieker & Bird, 2000). Except for
midwifery services, Medicaid and most private insurance plans do not typically support the cost of alternative health
care services, thus making them prohibitive for low‐income minorities. The cost of private practice doulas, for
example, can range anywhere from $300 to $1,800 (Campbell, Lake, Falk, & Backstrand, 2006). A fundamental cause
approach to maternal health acknowledges that women's choices are constrained and can identify the upstream
determinants that affect these choices.
3|ALTERNATIVE CAREGIVERS: THE ROLE OF MIDWIVES AND DOULAS IN
PROVIDING PRENATAL CARE SUPPORT TO PREGNANT WOMEN
3.1
|The use of midwives to address the multidimensional needs of African American
women
For much of American history, midwives—professionals trained to assist women in pregnancy, childbirth, and postpar-
tum—attended births. This began to change in the 19th century due to the professionalization of obstetrics‐gynecol-
ogy, an effort involving doctors campaigning against the knowledge systems of midwives, which were informal and
involved the use of homeopathic remedies and traditions. This resulted in a steep drop in the use of midwives, from
approximately half of all births in 1900 to 15% in 1935 (Rooks, 2007, p. 24). Midwives follow a holistic model of care
which goes beyond a sole focus on the physical needs of women to address their emotional and psychosocial needs
(MANA, 2008).
African American midwives, termed“granny midwives”by some, played a dominant role in early midwifery and
served the Black and White communities (Lee, 1996; Mongeau, Smith, & Maney, 1961; Robinson, 1984; Schwartz,
2006; Smith & Holmes, 1996). The medicalization of obstetrics‐gynecology led to a decline in African American mid-
wives serving both White and non‐White communities (Fraser, 2009). Today, Black midwives represent only 3–4% of
all midwives (Schuiling, Sipe, & Fullerton, 2013; Sipe, Fullerton, & Schuiling, 2009). While there appear to be no racial
disparities in women's use of CNMs, Whites predominately use“other midwives”(Declercq, 2015), which results in
higher rates in overall usage of midwives among Whites.
Midwifery's multifaceted view of the needs of women contrasts with the biomedical model, which focuses solely
on the physical needs of women and is intervention‐based. There is a large body of literature that supports midwifery
care both in and out of the hospital as a safe and viable option. Among low‐risk and moderate‐risk mothers, midwives
are associated with lower rates of medical interventions that produce outcomes equivalent to or better than conven-
tional care with obstetricians (Cragin & Kennedy, 2006; Johnson & Daviss, 2005). In a systematic review of 11 studies
comparing the outcomes of CNMs and physicians' care during labor and delivery, Johantgen et al. (2012) found that
CNMs achieve similar or even better outcomes than physicians despite not using technological interventions during
delivery. Several scholars (Benatar, Garrett, Howell, & Palmer, 2013; Johnson & Daviss, 2005; Stapleton, Osborne,
& Illuzzi, 2013; Wax et al., 2010) have discovered that low‐risk women delivering outside of hospitals experience
fewer interventions and similar intrapartum fetal mortality and neonatal mortality rates compared to their counter-
parts delivering in hospitals.
3.2|Doulas: Social support during pregnancy and birth
Doulas, or labor support professionals, provide various forms of support to pregnant mothers, including providing
educational information during the last trimester of pregnancy, offering words of support in the last stages of
pregnancy and during delivery, giving advice about birthing positions and breathing techniques during delivery, and
providing other forms of emotional and social support during delivery (Klaus, Kennell, & Klaus, 2012; Simkin, 1995;
Thornton & Lilford, 1994). Doulas can work in hospitals, birth centers, communities, or home settings. We include
ADAMS AND THOMAS 5of13

doulas as an alternative caregiver for two reasons. First, their philosophy of care is similar to that of midwives in that
they emphasize the overall well‐being of women rather than focus solely on the biological needs of birthing women.
Second, doulas constitute atypical care professionals for pregnant women in the US. While their philosophy is similar
to that of midwives, doulas are different in that they do not deliver clinical care but instead focus on the non‐clinical
care needs of pregnant women (Thornton & Lilford, 1994; Zhang, Bernasko, Leybovich, Fahs, & Hatch, 1996).
Doulas have been on the rise in the US and other Western contexts in recent decades (Pascali‐Bonaro & Kroeger,
2004; Steel, Frawley, Adams, & Diezel, 2015). Many countries, such as the United Kingdom, Switzerland, and Canada,
have professional doula associations; those without such professional associations instead have an informal base of
less‐organized doula workers. Results from the second and third waves of theListening to Motherssurvey showed
an increase in the use of doulas in the US from 3% in 2006 to 6% in 2012 (Declercq, Sakala, Corry, & Applebaum,
2006; Declercq et al., 2013). While the use of doulas has increased, it has not increased uniformly across groups. A
U.S. cross‐sectional national survey of over 600 doulas showed that while the vast majority (93.8%) of doulas were
White, only 6% of their clients were African American (Lantz, Low, Varkey, & Watson, 2005). In addition, only 2.6%
of doulas identified as African American (Lantz et al., 2005).
In a review of 22 randomized controlled trials conducted in 16 countries that examined continuous labor support
for women giving birth, Hodnett, Gates, Hofmeyr, and Sakala (2012) found that women with continuous labor support
were more likely to give birth without the aid of medical interventions, such as vacuum or forceps‐assisted births and
Caesarean sections, less likely to use pain medications, and more likely to be satisfied with their birth compared to
usual care without any adverse effects. Research on women's perceptions of doulas has also supported doula use,
as women who use continuous labor support report positive birth experiences (Campero et al., 1998; Deitrick &
Draves, 2008; Gentry, Nolte, Gonzalez, Pearson, & Ivey, 2010; Koumouitzes‐Douvia & Carr, 2006). There is some
evidence that doulas can serve an important role for low‐income minority women by helping them overcome barriers
to quality care and by enhancing their personal agency (Kozhimannil, Vogelsang, Hardeman, & Prasad, 2016).
Women's more positive birth experiences with doulas may be due to doulas' woman‐centered motivations, which
may result in fewer institutional preoccupations compared to other maternal health professionals (Campbell‐Voytal,
McComish, Visger, Rowland, & Kelleher, 2011; Hardeman & Kozhimannil, 2016). Like midwives, minority doulas
express a desire to support their racial/ethnic communities through their work (Hardeman & Kozhimannil, 2016).
The benefits of doulas for pregnant women exist despite their degree of marginalization in the formal health care
system relative to doctors, midwives, or even lactation consultants (Torres, 2013).
4|GROUP‐BASED CARE: SOCIAL CAPITAL FOR AFRICAN AMERICAN
WOMEN DURING PREGNANCY
We regard group prenatal care philosophy as an alternative form of care because it deviates in scope from the
traditional prenatal care model in the US. Group prenatal care aims to educate women about pregnancy and childbirth
in a group setting, with the goal of empowering patients to take control of their own health. Women are educated and
supported not only by a health professional but also by other women, which makes this form of prenatal care distinc-
tive. One of the most popular forms of group prenatal care is Centering Pregnancy (Rising, 1998; Rising, Kennedy, &
Klima, 2004). In this form of group‐based care, women attend approximately 10 sessions with a group of women
(approximately 8–12) of similar gestational age (Rising et al., 2004). Each session involves a physical with a provider,
which is followed by a group discussion with the provider (Rising et al., 2004).
Existing literature reviews on the relative effectiveness of group prenatal care compared to standard care have
shown that group care is equal or superior to traditional prenatal care in terms of perinatal outcomes (Ruiz‐Mirazo,
Lopez‐Yarto, & McDonald, 2012; Thielen, 2012). Research on the effects of group prenatal care have primarily
focused on high‐risk groups and have demonstrated benefits for these populations, including lower rates of preterm
birth (Ickovics et al., 2007; Picklesimer, Billings, Hale, Blackhurst, & Covington‐Kolb, 2012), improved health care
6of13 ADAMS AND THOMAS

utilization (Tandon, Cluxton‐Keller, Colon, Vega, & Alonso, 2013; Trudnak, Arboleda, Kirby, & Perrin, 2013), greater
levels of personal engagement in care (Novick et al., 2010; Tandon et al., 2013; Trudnak et al., 2013), and the delivery
of social support (McNeil et al., 2012; Novick et al., 2010) compared to standard care. Social support has been
discussed as a key aspect of group prenatal care that can reduce stress levels among pregnant women and provide
them with a more positive pregnancy experience (Rising et al., 2004). Research has shown that various forms of stress,
including racism‐induced stress, among pregnant African American women are high and that these stress levels neg-
atively affect African American women's birth outcomes (Collins et al., 1998; Dominguez, Dunkel‐Schetter, Glynn,
Hobel, & Sandman, 2008; Dominguez, Schetter, Mancuso, Rini, & Hobel, 2005; Giurgescu et al., 2012). Therefore,
social support is an important benefit for African Americans.
Unlike other alternative models of prenatal care, African Americans and Hispanic women are more likely than
White women to participate in‐group prenatal care (Declercq et al., 2013). A reason for this higher participation
may be minorities' history of reliance on their in‐group for various types of needs, including health‐related needs.
Research suggests that racial socialization and racial identity can promote resilience among African Americans (Brown,
2008; Miller, 1999; Miller & MacIntosh, 1999; Neblett, Philip, Cogburn, & Sellers, 2006). Therefore, group‐based care
may benefit racial minorities by contributing to a sense of collective identity grounded in a common racial heritage. By
taking advantage of group‐based care, minorities, low‐income women, and other marginalized groups who may feel
uncomfortable asking questions and expressing their concerns about pregnancy with an obstetrician (who, typically,
is a White male) may be more comfortable in a setting with women of similar gestational age and socioeconomic/racial
status.
5|ALTERNATIVE PRENATAL CARE MODELS: A WAY FORWARD FOR
IMPROVED AFRICAN AMERICAN MATERNAL AND INFANT HEALTH
When applied to maternal health, insights from the intersectionality, medicalization, and fundamental causes litera-
tures make sense of the epidemiological research showing that alternative prenatal care models can benefit pregnant
African American women more so than the standard approach to prenatal care. Intersectionality is a broad framework
through which to examine how the multiple vulnerabilities African American women face cohere to construct a
uniquely disadvantaged pregnancy experience. Other racial groups experience many of these vulnerabilities. For
example, American Indians and Alaska Natives have worse outcomes along multiple measures of maternal and infant
health compared to Whites, although in general, these outcomes are slightly better than those faced by African
Americans (Bryant et al., 2010). What differentiates African Americans from other minorities is that research (Lee &
Bean, 2007; Lee & Bean, 2010; Massey & Denton, 1993; Oliver & Shapiro, 1995; Parisi, Lichter, & Taquino, 2011;
Quillian & Campbell, 2003) in the areas of income and wealth inequality, residential segregation, social networks,
and interracial relationships has shown that Blacks have been slower to integrate into American society compared
to other minorities. Race scholars refer to this as“Black exceptionalism”(Gans, 2005; Lee & Bean, 2007; Lee & Bean,
2010; Parisi et al., 2011), which pertains to how racial boundaries are fading more rapidly for non‐Black minorities
compared to Blacks.
There are two public health policy implications of Black exceptionalism for African Americans. First, they need to
be viewed as a priority in policy changes concerning maternal health care. Second, policymakers should avoid a“one‐
size‐fits‐all”policy approach and instead tailor strategies for the needs of African American women. We argue that in
devising maternal health policies geared toward African Americans, policymakers should take a holistic perspective
that recognizes that the multiple disadvantages that African Americans face are tightly interwoven and require a
multipronged approach. The biomedical model is narrow and assumes that most women have similar needs; because
of this, women go through a highly similar monitoring process. This may have negative consequences for African
Americans, as research (Ting‐Toomey et al., 2000) has demonstrated that African Americans maintain a strong cultural
connection to their community, which may lead to culturally‐specific maternal health needs. Because not all aspects of
ADAMS AND THOMAS 7of13

the biomedical model have adverse maternal health impacts for African American women, health policies need not
abandon biomedical solutions entirely but instead should offer women a range of options.
Phelan et al. (2010) discussed three types of policies that can be used to effectively combat health inequalities:
the reduction of resource inequities, contextualizing risk factors, and creating interventions that can benefit people
at any level of socioeconomic status (p. S37). While policies involving alternative maternal health interventions cannot
eliminate resource inequities, we argue that such policies can take the form of the latter two strategies to resist
fundamental cause processes. Policies that contextualize risk factors intervene to address the factors that put people
“at risk of risks”(Phelan et al., 2010, p. S37). By giving minority women a voice and targeting their multifaceted health
needs, alternative maternal health interventions make it more likely that minority women will stay committed to their
prenatal care. Alternative interventions can be used to accomplish the third strategy through legislation, which will in
turn permit reimbursement for services that have been demonstrated to have positive effects on maternal/infant
health. In addition, other federal‐level policies, such as programs to support the training of Black midwives and doulas,
should be developed to facilitate the delivery of alternative services for needy communities. We do not argue that
these types of policies can break the links between status, race, and maternal health; however, we do believe they
can weaken them.
Sword (1999) constructed a multifaceted socio‐ecological model for conceptualizing the barriers to prenatal care
for vulnerable women. This framework recognizes patient utilization as a product of“two interacting systems”:
individual‐level behavior, which is affected by personal and situational attributes, and the characteristics of health ser-
vices and programs, which are influenced by various agency‐level and contextual influences (Sword, 1999, p. 1173).
Social networks, community factors, and public policies concerning maternal and infant health shape both systems
(Sword, 1999). Policies that incorporate the use of alternative prenatal care methods have the potential to address
the broader external factors that affect the way pregnant women navigate pregnancy and the way agencies offer pre-
natal services. For example, national‐level policies that seek to educate African American women about group‐based
care and provide financial support for the use of these services can give women the social support they may be
lacking.
6|CONCLUSION
In this paper, we proposed three sociological bodies of literature that can improve critical analyses of standard prena-
tal care and help scholars understand the utility of alternative models of prenatal care for African American women.
Intersectionality, in particular, allows us to position African American women in the broader socio‐historical
institutional milieu to understand how their marginalization may affect their pregnancy and childbirth experiences.
While intersectionality has been used to study a wide variety of topics, few scholars have investigated how the
intersections of gender, race, and class contribute to African American women's maternal health (Roberts, 2014).
More research is needed to explore the reasons why minority women fail to use alternative caregivers, investigat-
ing barriers such as unfamiliarity with alternatives to obstetricians, financial constraints, a lack of access to alternative
caregivers in their geographical area, and a lack of access to minority alternative caregivers, among others. Research
should also investigate the professional challenges facing minority doulas and midwives, as these challenges may pre-
vent minority women from utilizing alternative caregivers, which in turn may affect the maternal and infant health
benefits discussed in this paper associated with the use of midwives and doulas.
We believe these models have added value—specifically for African Americans—and, as such, can contribute to
the narrowing of Black–White maternal/infant health disparities. Although our discussion focused on applying these
theories to African Americans, future research and theorizing should investigate how the theories discussed here can
apply to the maternal health situation of different ethnic groups. Hispanics, for example, have maternal/infant health
outcomes similar to Whites (Bryant et al., 2010). However, as the immigrant health paradox has demonstrated, their
maternal/infant health declines the longer they reside in the US. We stress that all racial/ethnic groups in the US are
8of13 ADAMS AND THOMAS

disadvantaged by the prenatal care system; thus, alternative interventions should be promoted to all populations.
Other countries facing socioeconomic and/or racial maternal/infant health disparities can utilize our proposed frame-
work to forward sociological research in maternal health in their respective countries. Finally, we cannot conclude
from the literature that alternative methods can work for women considered high‐risk from a biomedical perspective,
as there is sparse research on the benefits of alternative models for this population. Future research should be
conducted to determine the value of these methods for high‐risk women with the goal of providing recommendations
for the best services for these women.
ORCID
Crystal Adamshttp://orcid.org/0000-0002-4982-5500
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Crystal Adamsis an Assistant Professor in the Department of Sociology at the University of Miami. Her primary
research interests are in the areas of medical sociology, community‐based participatory research, health promo-
tion, and health policy. Her most recent research merges risk society and medical sociology theories to understand
racial minorities' experiences with the direct‐to‐consumer advertising of prescription drug. She teaches graduate
and undergraduate courses in medical sociology, social epidemiology, and health disparities.
Shameka Poetry Thomasis a McKnight Doctoral Fellow and PhD student in the Department of Sociology at the
University of Miami. Shameka concentrates in Medical Sociology, Race Relations, and Maternal Health. Shameka
is a native of Miami, Florida, but also has participated on international research projects in Cuba, South Africa, and
the United Arab Emirates. Shameka was also a sociological fellow at the University of California‐Berkeley and is an
alumna of Spelman College cum laude, where she won the scholar‐activism award in Sociology and Anthropology.
How to cite this article:Adams C, Thomas SP. Alternative prenatal care interventions to alleviate Black–
White maternal/infant health disparities.Sociology Compass. 2018;12:e12549.
https://doi.org/10.1111/
soc4.12549
ADAMS AND THOMAS 13 of 13

Vol.:(0123456789) Journal of Racial and Ethnic Health Disparities
https://doi.org/10.1007/s40615-024-02015-y
“Lord Knows What’s Being Done with My Blood!”: Black Women’s
Perceptions of Biospecimen Donation for Clinical Research
in the United States
Kyrah K. Brown
1
· Shameka Poetry Thomas
2
· R. Mathew Brothers
1
· Yue Liao
1

Received: 5 November 2023 / Revised: 6 April 2024 / Accepted: 28 April 2024
© W. Montague Cobb-NMA Health Institute 2024
Abstract
Purpose Black women are underrepresented in clinical research and clinical trials. Knowledge gaps lead to biased clinical
practice and care. There is a small but growing body of literature on Black women’s perceptions about participation when
biospecimen donation is sought by researchers. This is the rst known study to investigate willingness to participate in clini-
cal research involving biospecimen donation among Black women of reproductive age in the United States.
Methods This cross-sectional study recruited 496 Black women (ages 18–49) from a research crowdsourcing platform.
Participants completed a 46-item online survey which asked about their willingness to provide blood samples for clinical
health research and reasons for their willingness or for any unwillingness. Descriptive statistics and thematic analysis method
were used to analyze the data.
Results Less than half (44%) of participants reported willingness to provide blood samples for clinical research. The most
common concerns of those expressing unwillingness to provide samples were “fear of blood sample being misused” and “dis-
trust with the health researchers handling the samples.? We identied six qualitative themes from the analysis of participants?
open-ended responses. The most important factors include a desire for integrity and transparency in research, institutional
racism contributing to mistrust, and adequate compensation and clearly de ned bene ts to participation.
Conclusions The recruitment and engagement of Black women in clinical biospecimen research should involve transparent,
trustworthy, and anti-racist practices and informed respect for Black women’s autonomy. There is a need to address Black
women?s concerns about exploitative prots and mistrust of academic and medical institutions.
Keywords Biospecimen · Patient preference · Black or African American · Health inequities · Racism · Women’s health
Introduction
The development of chronic health conditions such as car-
diometabolic and neurocognitive disease is inuenced by a
combination of genetic, behavioral, and environmental fac-
tors in the United States (US) [1 ]. Black women, in this case,
often experience chronic exposure to social, economic, and
environmental stressors driven by structural racism; and thus
it is important to acknowledge how premature biological
aging via weathering contributes to a greater risk of develop-
ing chronic health conditions [2 , 3].
To better understand the dysregulation and protective
biological mechanisms that can inform suitable clinical
and public health intervention strategies, the collection of
human biospecimens is vital in clinical and socio-behavioral
research [4–6]. Human biospecimen donation, in this regard,
includes the collection of materials, such as tissue, blood,
plasma, urine, or saliva, from the human body that can be
used for diagnosis and analysis.
Biospecimens can be used to identify and validate ways
to deliver drugs to speci c cells, identify how diseases pro-
gress or vary, identify how groups of patients respond to
speci c drugs or treatment regimes, and develop screen-
ing tests which detect biomarkers that are associated with
certain stages or sub-types of a disease [7 ] Black women,
* Kyrah K. Brown
[email protected]
1
Department of Kinesiology, University of Texas
at Arlington, 500 W. Nedderman Drive, Arlington,
TX 76019, USA
2
School of Public Health, Harvard University, Boston, MA,
USA

Journal of Racial and Ethnic Health Disparities
however, remain misrepresented and underrepresented in
clinical research and trials, particularly in studies involving
biospecimen donation [8 –14]. The underrepresentation of
Black women in clinical research and trials creates critical
knowledge gaps and enables biased clinical inferences, mis-
diagnoses, misrepresentation, and clinical care practices that
do not meet the needs of the population through precision
medicine and therapies [15– 19].
There is a small but growing body of literature on Black
women’s attitudes towards participating in research involv-
ing biospecimen donation. The existing research is primarily
focused on cancer genetics, with limited exploration into
the context of cardiovascular health or other preventable
chronic health conditions [20 –24]. Additionally, women
of reproductive age women (18–49 years) are underrepre-
sented in the available literature compared to older women
(≥ 55 years) [20, 25]. Available studies suggest that older
age may be associated with greater willingness to donate
biospecimens among Black women [20, 26] and that pro-
spective research participants who self-report as Black have
expressed concerns related to mistrust of medical and aca-
demic institutions’ use of their samples, navigating unclear
consent forms, and the need to have control over their how
their samples are used [15, 23, 24, 27].
To address existing knowledge gaps, this is the first
known study to examine willingness to donate blood sam-
ples for clinical and scientic health resarch among Black
women of reproductive age in the US. women of. Accord-
ingly, this study seeks to understand the factors that inu-
ence their decisions and identify potential barriers and facili-
tators to biospecimen donation among Black women.
Methods
This investigation was a part of a larger cross-sectional study
examining health status, physical activity, sleep quality, use
of wearable sensors, and attitudes about biospecimen collec-
tion among Black women of reproductive age (18–49 years)
living in the US. Although reproductive age begins biologi-
cally as soon as menstrual cycles occur until menopause, the
present study focused on adults ages 18 to 49 years.
Participants were recruited using Prolic, a high-quality,
widely used platform for crowdsourcing behavioral research
and providing a diverse pool of participants. Individuals
were eligible if they (1) reported being assigned female sex
at birth, (2) self-identied as Black or African American,
(3) reported being between 18 and 49 years old, and (4)
reported permanent residence in the US. Once we entered
the eligibility criteria into Prolic?s recruitment dashboard,
all eligible users received a notication about the study. We
did not exclude participants based on their gender identity
nor sexual orientation. Prospective participants clicked the
study survey link, reviewed the informed consent, and, if
they consented, completed the survey. Participants were
compensated at the rate of USD 9.54 per hour to complete
this survey study. Data collection occurred in February 2021
and 500 participants was the recruitment goal.
QuestionPro (QuestionPro, Seattle, WA, USA) is an
online survey software that was used to administer the sur-
vey study. The survey included 46 questions that assessed
participants’ current physical activity level, sleep quality,
health information technology usage, wearable tracker use,
perceptions of remotely delivered intervention components,
attitudes about biospecimen collection, and demographic
information [28]. Demographic variables included age (1,
“18–34 years old”; 2, “35–49 years old”), employment status
(1, ”Employed”; 2, “Not Employed”), educational attain-
ment (1, ”High school diploma or less”; 2, “Some college or
vocational training”; 3, “Bachelor’s degree or more”), insur-
ance status (1, “Insured”; 2, “Uninsured”), marital status (1,
“Not Married”; 2, “Married”; 3, “Separated/Divorced/Wid-
owed”), and nativity (1, “U.S.-born”; 2, “Foreign-born”).
Chronic health condition as “conditions that last one year
or more and require ongoing medical attention of limit
activities of daily living or both” [29]. We measured chronic
health condition using a select-all-that-apply question which
provided a list of conditions and an open-ended option for
conditions that were not presented in the list. This variable
was recoded into a categorical variable.
The survey measured viewpoints including questions
related to attitudes about biospecimen collection. All par-
ticipants were asked, “would you ever be willing to provide
blood samples for cardiovascular health research purposes
(1, Yes; 2, No; 3, Not Sure). We combined “no” and “not sure”
responses which are hereafter referred to “unwillingness” and
“uncertainty.” We recognize that conceptually “unwillingness”
and ?uncertainty? are dierent and should not be conated.
However, there were no observable dierences based on the
selection of either option, and our intent was to understand the
concerns of individuals who selected either “no” or “not sure.”
If participants selected “No or “Not sure,” they were
asked to identify their concerns from a list of four options
and an open-ended option and to identify what factors would
increase the likelihood of them providing blood samples for
health research purposes from a list of ve options and an
open-ended option. The term blood sample was used to
refer broadly to the collection of blood specimen samples
via any method (i.e., capillary blood sampling, venous blood
sampling).
Statistical analyses were conducted using the SPSS ver-
sion 26.0 (IBM Corp, Armonk, NY, USA). Descriptive sta-
tistics were generated for all variables, including percentages
for categorical variables. Univariate and bivariate analyses
were performed to identify potential associations between
sociodemographic variables and the measures of interest.

Journal of Racial and Ethnic Health Disparities
The qualitative data from the open-ended survey ques-
tions were analyzed in Microsoft Excel using Braun and
Clarke?s ve-step thematic analysis method [30]. Two inde-
pendent coders (KKB, YL) performed the analytic steps
one open-ended question at a time. First, the researchers
independently read the responses to the open-ended question
to familiarize themselves with the content. The researchers
then independently identi ed and coded meaningful units
of text from the open-ended responses. The research team
completed these steps iteratively until all three open-ended
questions were analyzed. In the third step, the research team
convened to discuss the initial and re ne codes. The research
team sorted codes into potential themes and collated all
data extracts (quotes). In the fourth step, the research team
reviewed and named the themes. The research team de ned
each theme by describing the essence of what each theme
was about through discussion and consensus. The research
team then nalized the themes and prepared a written report
for the ndings.
Ethical approval was obtained by the Institutional Review
Board at the University of Texas at Arlington (# 2021–0207).
Results
Participant Characteristics
A total of 499 individuals enrolled and completed the study.
Two individuals were excluded from the analysis because
they did not self-identify as Black or African American
and one was excluded due to insucient responses on the
variables of interest. Thus, the analytic sample included 496
Black women. Participants’ average age was 28 years old
(SD = 7.50, range 18–47 years old). Most participants were
non-Hispanic (95.9%), US-born (95.8%), single (74.6%), not
currently pregnant (97.4%), and reported no chronic disease
conditions (62%) (Table 1).
Quantitative Results
Less than half of the participants (44%, n = 218) reported
being willing to provide blood samples for cardiovascular
health research. Separate bivariate analyses indicate no sta-
tistically signicant dierences in willingness to provide
blood samples by demographic characteristics (data not
shown).
Among participants who reported unwillingness to
provide blood samples (56%, n = 278), the most com-
mon concerns identified were “fear of the blood sam-
ple being misused or used for profit” and “distrust of
health researchers’ handling the blood sample” (Fig. 1).
This group of participants was also asked what factors
would increase their likelihood of providing blood sam-
ples for health research (Fig. 2). The most common fac-
tors reported included the research team being clear
about what the blood samples would be used for and
the research team paying participants for their time and
effort.
Table 1 Participant demographic characteristics (n = 496)
1
De ned as any health condition that lasts 1 year or more and
requires ongoing medical attention or limits activities of daily living
or both such as diabetes, hypertension, asthma, sickle cell disease, or
other conditions.
Demographic variables n %
Hispanic or Latin ancestry
Yes 20 4%
No 472 95.2%
Prefer not to say 4 0.8%
Student status
Yes (full or part-time) 186 35.9%
No 318 64.1%
Employment status
Employed, full-time 173 34.9%
Employed, part-time 92 18.5%
Self-employed 46 9.3%
Not Employed 154 31.0%
Other 31 6.2%
Educational attainment
Completed up to 12th grade (no diploma)11 2.2%
High school diploma or GED 48 9.8%
Some college or vocational training226 45.6%
Bachelor’s degree 149 30.0%
Master’s degree or higher 62 12.5%
Insurance status
Insured 410 82.7%
Uninsured 64 12.9%
Not sure 22 4.4%
Marital status
Single 371 74.8%
Married 96 19.4%
Separated/divorced/widowed 25 5.0%
Prefer not to say/missing 4 0.8%
Chronic health conditions
1
None 307 62.0%
One 163 32.8%
More than one 26 5.2%
Nativity
US-born 475 95.8
Foreign-born 19 3.8
Prefer not to say 2 0.4%

Journal of Racial and Ethnic Health Disparities
Qualitative Results
Theme 1: Black Women Desire (and Value) Integrity
and Transparency
Participants who reported uncertainty or unwillingness
to provide blood samples for health research expressed
concerns related to the integrity and transparency of
the research study and team. For example, participants
reported being uncertain about how their samples would
be used if they did provide them for a research study.
Related, participants expressed concerns about research
teams misusing their blood samples for purposes outside
of the scope of the study (e.g., for pro t). Participants also
reported concerns related to privacy and con dentiality.
For instance, participants were concerned about their iden-
tity potentially being revealed or perceived the process of
providing blood samples as intrusive.
P061: “I worry that my rights will be infringed upon.
Just not knowing how it [blood samples] will be used
concerns me.”
P110: “It would depend on what they were used for
and whether I trust the researchers. There is a greater
chance that I would not trust the researchers com-
pletely.”
P129: “I’m concerned about my identity being pri-
vate.”
P124: “It feels intrusive.”
On the other hand, participants provided insight into what
research and transparency practices might increase their
willingness to provide blood samples for health research.
They described the importance of proper disposal of blood
Fig. 1 Percentage of par-
ticipants who responded in the
armative to each question
item about concerns related
to blood sample donation for
research (n = 278)
56.5%
52.5%
39.9%
24.1%
I fear that my samples will be misused or used for profit.
I don't trust the health researchers with my blood
samples.
It is too much information for health researchers to
know about me.
I fear that health researchers will provide my samples to
the government.
Percent of participants
Fig. 2 Percentage of par-
ticipants who responded in the armative to each question item about factors that may increase their willingness to donate blood samples for research (n = 278)
62.6%
60.1%
54.0%
39.6%
30.6%
The research team is clear about what my blood samples
are being used for.
The research team pays me for my time and effort
The research team shares my blood sample results with
me.
When I know my samples would help to advance health
research.
The research team includes people who look like me.
Percent of participants

Journal of Racial and Ethnic Health Disparities
samples, clear contracts, not just consent forms, that are
written in the best interest of the participant, and prohibit-
ing the use of blood samples for pro t or government or law
enforcement use.
P015: “[If] the blood is properly disposed of after
research.”
P017: “[If] a contract is provided that states my blood
cannot be used for prot.?
P023: “[If there are] waivers that are signed [and] in
my favor.”
P038: “I have a signed contract that states that the
researchers won’t sell or give my results to outside
companies.”
P003: “They don’t let it be used by the government for
other potential projects or research.”
Theme 2: Black Women’s Mistrust Stems from Institutional
Racism
Participants who reported uncertainty or unwillingness to
provide blood samples for health research also acknowl-
edged the legacy of racism and harm inicted on Black
communities by the US medical and academic institutions.
In particular, participants speci cally mentioned concerns
regarding the impact of institutional racism and discrimina-
tion on Black women. According to participant responses,
the medical and academic institutions in the US are “inher-
ently racist,” and therefore, participants expressed distrust
in institutions’ capacity to prioritize Black women’s best
interest.
P138: “I don’t trust the medical community. I watched
my mother suer for months because no one would
take her seriously about testing her for MS and she was
a nurse….also there is a long history of Black people
being used like lab rats in this country.”
P051: “The medical institution is inherently racist.”
P149: ?Given the history that the medical eld has
with its treatment of Black patients, speci cally Black
women patients, I’m hesitant to release samples just
for the purpose of research.”
P154: ?Black women and the medical eld have not
and are not always cohesive. Lord knows what’s actu-
ally being done with my blood.”
Theme 3: Black Women's Willingness to Provide Blood
Samples is informed by Physical Discomfort and Time
Constraints
Participants also identi ed contextual factors which may
shape their decision to provide blood samples for health
research. First, participants reported having a general fear of
needles or physical discomfort with the process of providing
blood samples. Also, some participants felt that providing
blood samples would be an inconvenience for them. Several
participants cited concerns related to COVID-19 and indi-
cated that if the pandemic continues, they would be unwill-
ing to provide blood samples.
P105: “I don’t like needles.”
P058: “I have a needle phobia.”
P074: “Taking time out to do it is an inconvenience.”
P048: “I don’t like the feeling of getting my blood
taken. It hurts”
P146: “Giving blood has always been difficult for
me. Locating a vein in my arm is dicult for medical
personnel and I end up getting stuck repeatedly in an
attempt to nd a vein and its really painful.?
Theme 4: Black Women Desire Compensation and Clearly
Dened Benets of Clinical Research Participation
Participants indicated that compensation and a clear descrip-
tion of how the personal bene ts of the research were impor-
tant factors that may potentially increase their willingness
to participate in health research involving blood sample
collection.
P097: “It depends on if I’m getting paid to provide it
and who is receiving the samples.”
P126: “I need transparency and payment.”
P137: “I would want to know the incentives for me
giving blood.”
P150: ?It depends on if it will benet me.?
Theme 5: Black Women Are Willing to Participate
in Research Led by Trustworthy Teams
Participants frequently mentioned that their willing-
ness to provide blood samples for health research would
depend on the availability of detailed information about the

Journal of Racial and Ethnic Health Disparities
study’s purpose and procedures. Participants wanted to be
able to make an informed decision about whether to partici-
pate in a study. Moreover, participants reported that their
willingness to participate would also depend on whether
they perceived the research team as trustworthy and famil-
iar. Several participants indicated that they would consult
with their doctor and their willingness to participate would
depend on the doctor’s input or assistance.
P157: “It depends on if I trust the group [researchers].”
P140: “I would have to know them [researchers] bet-
ter.”
P113: “It depends if who I give them to can be trusted
to use them for said purpose only.”
P084: “It will depend on the circumstances of my doc-
tor [supporting] it.”
Theme 6: Black Women Should Have the Right
to Refuse Participation in Clinical Research
Finally, there were many participants who reported that there
is nothing that could be done to increase their willingness
to provide blood samples for health research. These partici-
pants cited distrust and skepticism or simply indicated that
they would never provide blood samples.
P007: “Nothing. I don’t trust it”.
P018: “I am not interested in providing blood sam-
ples.”
P083: “I’m skeptical of the real purpose of it.”
P022: “Nothing.”
Discussion
The results reveal that 44% of Black women of reproductive
age (18–49) in our sample were willing to provide blood
samples for health research. The scarcity of relevant studies
specically focused on this population?s perceptions about
biospecimen donation for research makes direct compari-
sons in the literature challenging. However, among studies
focused on Black adults, willingness to donate biospecimens
for research has generally been low, with rates below 40%
for cancer genetics studies [31– 33]. For Black women spe-
cically, a study reported that 51% of women (ages 21?69
years) in the sample were willing to provide buccal sam-
ples for cancer research [20]. The same study found that
48.6% of younger Black women (≤ 40 years) were willing
to provide buccal samples compared to 63% of older Black
women (≥ 60 years). These age dierences may be attributed
to older individuals’ hope that the research will personally
bene t them, especially if they have a chronic condition or
that the results from their participation may bene t future
generations [34]. This trend has been observed in other pop-
ulations as well [35, 36]. Further, we believe that these age
dierences may help to explain why some of our ndings
contradict other study results [37, 38]. Our study sample
commonly cited distrust of academic/medical institutions
and concerns about the misuse of biospecimens. In contrast,
Dash and colleagues [37] reported that distrust of the medi-
cal community was the least frequently reported barrier to
respondents’ willingness to donate biospecimens among the
Black men and women (M = 43 years; SD = 16.2) in their
study. The authors indicated that many of their participants
reported little to no knowledge of historical research injus-
tices like the Syphilis Experiment [37]. The authors also
reported that the study participants expressed the need for
African American/Black representation on the research team
[37]. Our study sample, however, reported that a representa-
tive research team was not enough to increase their willing-
ness to donate. Hagiwara and colleagues [38] also reported
that research exploitation and distrust of medical research-
ers were not major concerns among Black men and women
(M = 71.82 ± 8.34) in their study. Taken together, these
study samples [37, 38] were primarily Black adults pre-
sumably from the Baby Boomer generation (born between
1946 and 1965). Whereas, our study sample consisted of
Black women from Generation X (born 1996 − 1980), Gen-
eration Y (born 1981–1996), and Generation Z/Millennials
(born 1997?2012). Previous research suggests dierences
in Black millennials’ experience and conceptualization of
racism and racial injustice compared with Black adults
from the Baby Boomer generation [39– 41]. This is further
supported by other studies assessing biospecimen donation
among younger demographics who cited concerns similar
to those in our sample [42]. Therefore, it is possible that
this younger generation of prospective participants is more
hesitant to donate based on their awareness and disapproval
of historical and contemporary racial injustices in medicine
and research [39– 41].
We identi ed six themes which are discussed within
two broader categories: (1) trustworthiness and respect for
autonomy and (2) centering Black women in health research.
Trustworthiness and Respect for Autonomy
Three of the six themes were related to trustworthiness
and respect for autonomy: (1) institutional racism contrib-
utes to mistrust among Black women, (2) Black women
are willing to participate in research led by trustworthy

Journal of Racial and Ethnic Health Disparities
teams, and (3) some Black women will never be willing
to provide blood samples. These ndings suggest the need
to shift focus from changing participant trust levels to
improving the trustworthiness of research and institutions
in health research involving Black patient populations
[43–45]. Although some scholars have suggested educa-
tional interventions to address mistrust among racially
and ethnically minoritized populations, it is crucial to
acknowledge the role of medical research institutions in
perpetuating racist ideologies and inicting harm on these
communities. Therefore, further research is necessary to
explore community perspectives on what constitutes trust-
worthiness [43, 44, 46, 47] and to identify strategies that
researchers and research institutions can use to build and
maintain trustworthiness. Such strategies should reect
intentional, anti-racist practices and policies that engen-
der trust [43, 44, 47]. The recent release of a toolkit by
the Association of American Medical Colleges (AAMC)
Center for Health Justice may serve as a helpful starting
point. The toolkit outlines ten principles of trustworthi-
ness that can guide researchers and institutions in fostering
trusting relationships with communities and participants
[48]. Furthermore, our ndings suggest that many Black
women view Black representation on research teams as
insucient for establishing trust among potential partici-
pants and mitigating racial bias and harm throughout the
research process. This nding aligns with prior research
that emphasizes the need for researchers and institutions to
be intentional about the organizational character, culture,
and climate when cultivating and adopting diversity as
an ethos [44, 49]. Such eorts can be sustained by pro-
moting an intentional antiracist approach [49, 50]. The
adoption of an antiracist framework means that investiga-
tors assume that racism is maintained within institutions,
and then use nonracist research methodologies to ensure
that study results are disseminated to bene t and empower
study populations [51].
Finally, the study ndings suggest that it is crucial for
researchers to recognize that some Black women may never
change their minds about providing blood samples for health
research. This nding has signi cant implications for respect
for autonomy, which is both a reproductive justice principle
and a bioethical principle of biomedical research. It is criti-
cal to acknowledge all individuals’ autonomy and the duty
of researchers to respect individuals and act accordingly to
uphold it [52, 53]. This principle is especially signi cant
for Black women in the US, who have persistently resisted
forces that have sought to strip them of their bodily auton-
omy—from the forced reproduction of enslaved African
women to forced and coerced medical procedures [54, 55].
Western perspectives on bioethics have long overlooked how
moral agents (such as research participants) are embedded in
relationships (with institutions and communities) and nested
within complex social, economic, political, and historical
contexts which all shape their decision-making [56].
Centering Black Women in Clinical Research
Three additional themes were identi ed in this study: (1)
social factors may shape Black women’s willingness to pro-
vide blood samples, (2) Black women desire research integ-
rity and transparency, and (3) Black women desire adequate
compensation and clearly de ned bene ts to participation.
These themes aid in oering insights about how to center
Black women in cardiovascular and ongoing health research
[44, 67].
This study revealed that some participants were unwill-
ing to donate blood samples because of their fear of nee-
dles or physical discomfort, which is commonly reported in
other patient populations [46, 57]. Participants’ fear of the
COVID-19 pandemic is also consistent with recent research
on the impact of the COVID-19 pandemic on blood dona-
tions [58]. This suggests that these social and contextual
factors should be considered when engaging Black women
in health research.
In terms of integrity and transparency, there has been
research focused on enhancing transparency and the con-
sent process for research involving biospecimen collec-
tion [59– 62]. Much of this research suggests the need
for using anti-racist frames that can guide the continued
eorts towards ensuring trustworthiness and transparency
in research involving biospecimen collection [62]. From a
researcher?s perspective, this means rst developing a rm
understanding of historical and contemporary racism within
medical research. Similar to prior research, our ndings sug-
gest that it is imperative for research protocols and consent
forms to clearly and comprehensively address the study
purpose, the direct bene ts and risks to the individual, and
full details about blood sample use, storage, and disposal.
Researchers should make intentional eort to ensure that
participants are given clear information about the samples
they provided. For example, strategies such as simpli ca-
tion of the consent form and one-on-one discussions (e.g.,
scheduling additional time to discuss information with par-
ticipants) have improved comprehension and satisfaction
[63, 64].
Recommendations for Policy and Practice
Additionally, to ensure participants understand how their
blood samples may be used for the study (or after the
study), researchers should explore new ways of leverag-
ing technology to ensure participant consent or noti ca-
tion after initial data collection [65, 66]. It may also be
important for studies to document participants’ reasons for
accepting or declining invitations to join studies or donate

Journal of Racial and Ethnic Health Disparities
blood samples. An additional strategy that researchers
could employ is to begin naming and acknowledging
implicit racial bias in the risk/discomfort sections of study
consent forms and identify strategies that will be taken to
minimize these risks. From the perspective of research
institutions, adopting an antiracist frame might include
creating institutional policies that protect against harm and
discrimination [62], developing systems of accountability
that incentivize and track equity successes and areas of
improvement [62], requiring implicit bias and antiracist
practice training for all institutional sta [62].
Strengths and Limitations
To our knowledge, the present study is the rst to examine
willingness to donate blood samples to health research
among Black women of reproductive age. Related, the use
of qualitative data allowed for an in-depth exploration into
the factors that may or may not inuence young Black
women’s attitudes towards biospecimen donation. Another
study strength is the recruitment of Black women from
across the US and US territories.
Another limitation is the ndings may not be generalizable
to all Black people of reproductive age who were assigned
female sex at birthdue to the diversity of this population in
terms of gender identity, sexual orientation, trans experience,
and additional social identities Also, the study survey did not
include questions about gender identity or sexual orientation
which limited our ability to further disaggregate the data.
Future research should capture participants’ gender identity,
sexual orientation, and other characteristics that reect the
diversity of this population. There is also a potential risk of
selection bias due to the study sample being recruited from
Proli c, which limits study participation to registered users
who have the capacity to consent to study participation. It
can also be assumed that the sample was limited to women
who had access to the Internet. The perspectives of young
women and girls of reproductive age (ages 15–17) were not
captured. The sample was comprised mostly of women who
were ages 18–34, employed, who had some college or less,
who were single, and who reported having no chronic health
condition (see Table 1). In this study, participants were not
asked about other forms of biospecimen sampling (e.g., urine,
saliva) or dierent methods of blood sampling (i.e., capillary
vs. venous). This study’s qualitative results were based on
open-ended survey responses and not interview data. There-
fore, there was no opportunity to ask follow-up questions to
gain clarity from participants’ responses, which likely limits
the depth of participants’ responses. Finally, this study inves-
tigated Black women’s willingness to provide biospecimens
and does not reect the actual donation of biospecimens.
There is some evidence that willingness to donate may not
fully translate to actual biospecimen donation, which should
be explored further [67]. Related, willingness also may not
be equivalent to favorability. For example, it is possible for
prospective research participants to feel indierent or disap-
proving of biospecimen donation and still report willingness
to donate biospecimens because of other external factors that
aect their livelihood (e.g., compensation, medical documen-
tation for work). Future work exploring nuances in patient
perspectives in warranted.
Conclusion
Centering the perspectives of Black women of reproductive
age is important in clinical research, especially as rates of
adverse health outcomes in this population have increased.
Our study captures a vital perspective on speci c chal-
lenges with patient engagement among Black women in
clinical research. Perhaps, the most critical challenge is to
improve recruitment, engagement, and retention of Black
women in clinical research; however, this task must be met
by employing anti-racist frameworks that center on Black
women’s lived experiences [67]. Bodily autonomy, thus, is
an integral necessity for promoting trust and trustworthiness.
In other words, we cannot alleviate these health inequities,
without also addressing the historical and current realities
that have dehumanized Black women in clinical research.
Our hope is that this study illustrates the urgency of this
call. It is certainly not enough to collect blood samples and
biospecimens without going the extra mile to contextual-
ize hesitancy and resistance. Ultimately, we must grapple
with what it means to collect blood samples in a social/
institutional structure that has made scienti c innovations
through the medical oppression of Black women’s bodies.
Our survey-based study shows that patients and future study
participants still bring these historical memories with them
to clinical encounters, directly and indirectly. Ultimately, the
eld has a long way to go with regard to making signi cant
improvements in this area, but perhaps a good starting point
is to prioritize Black women who volunteer for research as
humans in clinical and scientic research?rather than as
mere experimental subjects.
Author Contribution Conceptualization, K.K.B and Y.L.; methodol-
ogy, Y.L. and K.K.B.; formal analysis, K.K.B and Y.L.; writing—origi-
nal draft preparation, K.K.B.; writing—review and editing, Y.L., S.P.T.,
R.M.B; funding acquisition, Y.L. All authors have read and agreed to
the published version of the manuscript.
Funding This research study was supported by startup funds awarded
to Dr. Yue Liao from the University of Texas at Arlington.
Data Availability The data presented in this study are available on rea-
sonable request from the corresponding author.

Journal of Racial and Ethnic Health Disparities
Declarations
Competing Interests The authors declare no competing interests.
Ethics Approval This study was conducted according to the guide-
lines of the Declaration of Helsinki and approved by the Institutional
Review Board of the University of Texas at Arlington (protocol number
2021−0207) on 1 February 2021.
Consent to Participate Informed consent was obtained from all sub-
jects involved in the study.
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Vol:.(1234567890) Maternal and Child Health Journal (2022) 26:700–707
https://doi.org/10.1007/s10995-021-03188-21 3
Street‑Race in Reproductive Health: A Qualitative Study
of the Pregnancy and Birthing Experiences among Black
and Afro‑Latina Women in South Florida
Shameka Poetry Thomas
1

Accepted: 9 June 2021 / Published online: 16 July 2021
© This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2021
Abstract
Objective The lived-experience of race and racism among historically vulnerable populations needs critical examination in
the United States? (US)maternal and reproductive healthcare system. This study aims to measure how street-race inuences
the experiences of pregnancy and birthing among Black and Afro-Latina women in the South Florida region. Street-race,
in this study, focuses on the lived experiences of phenotype and colorism (as real consequences due to structural racism)
imposed on women during clinical encounters.
Methods Twenty-ve women who self-reported their racial and street-identity as Black and / or Afro-Latina were inter-
viewed, utilizing the qualitative approaches of narrative medicine and phenomenology. Study participants also had to have
at least one recent pregnancy or birth of a living child (< 24 months).
Results Adverse maternal mortality outcomes also do not tell the full story of what it means to be Black while giving birth
in North America. The dominance of White-presenting Latinx individuals in South Florida (a seemingly “diverse” urban
region) is also historical and persistent. These oppositional consequences at the clinical encounter, regarding street-race,
further illustrate how White-dominance (via phenotype and skin color) are ever-present across US healthcare institutions
serving pregnant women.
Relevance The lived experience of hegemonic racial hierarchies (e.g., Black and White), ongoingly contributes to the raciali-
zation of maternal and reproductive healthcare in the US, as more attention is needed to achieve health equity.
Keywords Maternal and reproductive health disparities · Street-race · Lived-experiences · Qualitative methods · Black
women · Afro-Latina women · Reproductive health equity · United States
Introduction
Black women are three to four times more likely to die
from preventable complications during pregnancy and birth
compared to White women in the United States (Adams
and Thomas 2018; Center for Disease Control, 2021; Col-
lins et al., 2004; Giscombe et al., 2005; Guerra-Reyes &
Hamilton, 2016). Maternal mortality outcomes, however,
do not tell the full story of what it means to give birth as a
(physically-visible) Black person in America. This study,
therefore, focuses on the pregnancy and birthing experiences
among Black and Afro-Latina women who are phenotypi-
cally perceived as Black, regardless of self-reported race
identity.
To investigate what race means during pregnancy and
birthing, understanding the lived-experience of racism is
critical for achieving reproductive equity. Simply regurgi-
tating adverse maternal outcomes does not suciently con-
textualize the lived-experiences of historically vulnerable
groups at the micro level. Street-race, in this regard, means
that phenotype and skin color also operate as a social status
and takes into account how structural racism perpetuates
anti-Black racism (Lopez et al., 2018). Street-race, employed
as a social status in this study, captures the importance for
understanding the ongoing racialization of maternal and
reproductive health experiences during clinical encounters.
Street-race thus is an imperative social category to
explore, particularly among: a) Black women (who are
* Shameka Poetry Thomas
[email protected];
[email protected]
1
University of Miami, Coral Gables, USA

701Maternal and Child Health Journal (2022) 26:700–707 1 3
historically compared to White female groups); b) and Afro-
Latina women (who are often miscategorized and conated
with White-Latinx groups). Lopez and colleagues (2018)
suggest that because of the complexities and pervasiveness
of White supremacy across North, Central, and South Amer-
ica, the racial hierarchies that operate among Black groups
also run parallel across Latinx groups. Colorism, in this vein,
can be dened as a ?color preference [and] cousin of racial
prejudice…that is, for whatever reason, light-skinned—and
sometimes dark-skinned—people attribute higher status and
grant more power and wealth to one group, typically those
designated as white” (Hochschild & Weaver, 2007: 645).
Race, in this regard, is a complex to measure because
ethnicity is often conated with race. Racial and ethnic ter-
minology, such as “Hispanic” or “Latina” imposed on Black
and Afro-Latina women from the US Census or General
Social Survey, further conates race and ethnicity (Lopez
et al., 2018). This complexity is largely too due to the West-
ern-dominant, binary of Black and White that is socially
constructed to function as pervasive, hegemonic racial
categories (Hunter, 2007; Newby & Dowling, 2007). Anti-
blackness, in this case, is upheld within Latinx populations
as a consequence of structural racism across the Americas.
This means that not all Latinxs have the same lived-experi-
ences, nor do they share the same ancestral lineages (Lopez
et al., 2018; Zambara and Dill, 2006). These social catego-
ries present deep-seated problems for women who can check
multiple racial and ethnic categories, but are nevertheless
perceived as Black women (due to their skin complexion and
phenotype) across their everyday lived experiences.
Applying street-race, in this vein, allows for examining
maternal and reproductive health disparities through a dier-
ent lens, by asking: how does an individual believe persons
in America, perceive their racial identity, at the level of the
street? (Lopez et al., 2018).
Methods
This study utilizes the qualitative approaches of narrative
medicine and phenomenology. Narrative medicine aids the
process of phenomenological interviews, as the researcher
should not impose or instruct study participants on “how to
feel,” “what to think,” or “what to say” about their health
experiences. In other words, the patient’s health narrative
belongs to the patient who lives their own health experience
(Charon, 2006; Lee, 2014; Murphy et al., 2018).
The narratives in this study thus were not systematically
coded on the basis of empirical or positivist features, such
as, the number of times a term or phrase appeared. Rather,
and consistent with phenomenology, the interviews were
designed to foster dialogue between the researcher and the
respondent (Mishler, 1984). Since dialogue is not necessarily
mechanical in everyday interactions, it is important to high-
light that everyday dialogue is full of ongoing interpreta-
tions, missteps, considerations, voice tones, and clarica-
tions. Therefore, the interlocutors must begin to appreciate
that any single expression can have a variety of meanings.
Therefore, it is not enough to “count” systemically how
much a phrase or word appears when evaluating the lived-
experience. The key point is to engage constantly with the
interview?s audio le to capture the silences, hesitations,
voice inections, tone of the narrative. In this manner of
dialogue (Merleau-Ponty, 1973; Murphy et al., 2018), data
are not merely analyzed (as if respondents are variables)
but data is interpreted in light of the need to enter into the
narration, to grasp the story, in the manner intended by the
owner of the narrative. This form of data analysis (via phe-
nomenology) is innovative for maternal and reproductive
health equity because it allows for capturing the texture and
nuances of the lived-experience that historically vulnerable
populations may face at the granular level.
The study sample consisted of 25 Black and Afro-Latina
Women
1
across the US’s southeastern region of South
Florida (see Table 1 ). Women who self-identied as ?Non-
Hispanic White” or “Hispanic-White” were excluded from
this study. The rationale for this exclusion is because the
eld of maternal health needs extensive empirical studies
contributing to the intra-racial variance among Black and
Afro-Latina women as non-monolithic groups (Newby &
Dowling, 2007). Since the literature on Black and Afro-
Latinx experiences in South Florida is not substantial (Color
of Wealth in Miami Report, 2019) this presents an opportu-
nity to understand reproductive health in urban settings. For
example, on a surface level, South Florida can be perceived
as a “diverse” region (with a wide range of racial and eth-
nic groups), but the question is, how can street-race help
us understand the dynamics of race, racism, and phenotype
within reproductive health, underneath the surface?
Study participants, eligible for this study, met the follow-
ing inclusion criteria: (1) self-identied as Black and self-
reported their street-race as Black, regardless of ethnicity,
(2) female adults (18 and older) who are able to verbally
consent, (3) not currently pregnant at the time of the study,
(4) not presently involved with any correctional facilities
(e.g. not incarcerated or on probation or parole at the time of
the interview, (5) and must have had at least one pregnancy
or birth in the South Florida area of a living child, who is
less than 2 years of age.
1
Black and Afro-Latina woman also self-identify as Black Latina,
Afro-Caribbean, and or African-American. Any typology of black-
ness can be included, as long as the study participant self-identies
as Black and has recently given birth in the South Florida region of
the US.

702 Maternal and Child Health Journal (2022) 26:700–7071 3
Recruitment of study participants were obtained through
purposive, referral sampling. Purposive and referral sam-
pling is a strategy that allows the researcher and/or par-
ticipants to make recommendations via “word-of-mouth”
to other potential persons to be interviewed (Singleton &
Straits, 2010). Referral-sampling techniques, such as ask-
ing a variety of women within the researcher’s personal and
professional network for recommendations, allowing for
study participants to be included in the recruitment process.
Recruitment eorts began at a beauty salon and barber
shop, located in Miami Gardens/Opa-Locka, Florida (which
is a predominately Black neighborhood in South Florida);
and Hialeah (which is a predominately Latin neighbor-
hood, that shares borders with Miami Gardens/Opa-Locka).
Recruitment eorts were also directed at local churches,
local universities, and local elementary schools where
women navigate everyday life in South Florida. Neighbor-
hoods across Little Havana and Little Haiti (where Afro-
Latina and Afro-Caribbean women tend to cluster) also
provided a substantial amount of access to the local South
Floridian culture (e.g., Little Haiti Cultural Arts Center
oered free African dance classes and maternal health work-
shops, where I also met and recruited women for the study).
Hospitals, maternity centers, and biomedical facilities
were excluded from the recruitment process, so as not to
give the impression of institutional advocacy and/or partisan
partnerships. Since I was a health-researcher from Univer-
sity of Miami, this restriction aimed to reduce the poten-
tial bias that may be associated with my aliation (e.g.,
and since University of Miami Hospital is one of the most
frequented health providers specically for high-risk preg-
nancy and birth in the metropolitan Miami area). Moreover,
my argument for not recruiting in biomedical facilities was
also to minimize the historical hierarchy between biomedi-
cal approaches and midwifery (or holistic) models of birth
work (Simonds et al., 2007). This distinction is important
because it aims to reduce the potential stigmatization that
may arise, during the interview process, if a study partici-
pant decides to share experiences using midwifery or holis-
tic health approaches, rather than biomedical interventions
(Mishler, 1984).
Each interview duration was approximately 60–120 min;
and conducted at the location of the participant’s preference.
For example, I met respondents at their preferred location
(e.g., homes, parks, nail salons, beauty salons, etc.). Con-
ducting interviews in the participants’ preferred location also
aims to reduce social desirability that often occurs when
conducting interviews in biomedical facilities and clinical
settings (e.g., hospitals or research labs), specically when
discussing matters of pregnancy and birthing experiences.
To address validity, it is most eective if interviews are con-
ducted where respondents have options to suggest where
they feel the most comfortable to share narratives and testi-
monials (Charon, 2006; Mishler, 1984; Singleton & Straits,
2010).
Two phases divide the data collection and interview
protocol: (1) pregnancy/prenatal care and (2) birthing/
labor and delivery. Demographic information was collected
about the participants. Demographic information included:
Table 1 Socio-demographic characteristics of study participants
(N = 25)
Characteristics N
Race
Self-identied race
Black/African-American 12
Afro-Latina 7
Afro-Caribbean 4
Mixed-race 2
Street-race (self-perceived)
Black/African-American 24
Brown Chicana 1
Age
18–25 2
20–25 3
25–30 5
30+ 10
Education
GED/high school diploma 13
College degree 7
Advanced degree (RN, JD, MA, MD, PhD) 5
Partnership status
Partnered w/father of infant 13
Coparenting or non-partnered 12
Prenatal risk-factor
High-risk 19
Low-risk 6
Birth type
Cesarean section 15
Vaginal delivery w/epidural 8
Vaginal delivery w/out epidural 1
Vaginal delivery after cesarean section 1
Birth place
Hospital 24
Birth center 1
Insurance type
Medicaid 20
Private 5
Prenatal comorbidity
Gestational diabetes, hypertension, preeclampsia or blood clots13
Congestive heart failure 1
HIV 1

703Maternal and Child Health Journal (2022) 26:700–707 1 3
self-identied racial background, perceived-race,
2
date of
birth, number of births, type of birth (e.g., vaginal delivery
or cesarean section), type of health insurance, birth weight
of infant, type of provider, and duration of labor. The inter-
view protocol was based on six broad questions: “Tell me
about your most recent pregnancy”; “Tell me about your
prenatal care”; “What were your experiences with the
person(s) involved in your care?”; “Tell me about the place
where you gave birth”; “What were your experiences like
being a Black woman (and / or being perceived as a Black
woman) with the providers in your care?”; and “Tell me
about your care experiences of being pregnant and giving
birth in South Florida?”.
Multiple considerations guided the interview protocol.
For instance, in order to measure racial experiences at the
clinical encounter, the interviewing process was intention-
ally conducted by a two-part question format, involving: (1)
What happened at the clinical encounter; and (2) How do
you FEEL about what happened at the clinical encounter?
I argue that this distinction is important because what hap-
pened at the clinical encounter can often yield a dierent
respond that is contingent upon how a patient feels about
what happened at the clinical encounter. This allows for the
more concealed interpretation of what happened (beyond the
surface level) to be revealed (Charon, 2006), which is argu-
ably where the most authentic response often takes shape.
Ethical Approval
The Institutional Review Board at the University of Miami
approved this study in June 2018. The continuing report
approval was added in June 2019. Field work and data col-
lection was completed between January and July 2019.
Informed consent was obtained from of the study partici-
pants. Names were converted to pseudonym for the protec-
tion and honor of the study participants who shared such
intimate narratives.
Table 1 illustrates the socio-demographic characteristics
of the study participants.
Results
The dominance of White-presenting Latinx groups is per-
vasive in clinical encounters, especially involving mater-
nal and reproductive health in the South Florida region.
White-presenting means that street-race (or phenotype) has
consequences at the clinical encounter (e.g., “being Latinx”
while “looking black”), are not synonymous.
I feel like the Latin people, the Spanish people, they
[so] automatic… they’re even worse. And I know
that because me, myself, I’m Dominican and Puerto
Rican, but in my appearance, I don’t look Dominican
or Puerto Rican to their standards, so automatically
they assume things about me, or who I am or my edu-
cation, So, one time I went to sign up to do blood work
at Quest Labs. I sign in and the lady starts talking.
She says… She starts talking to me about something
and I answer in Spanish, and she keeps talking to me
English, and my response to her was, ‘You didn’t know
I knew how to speak Spanish because of my hair? Is
it my hair or is it my skin color? Or is it the fact that
I’m not speaking to you with an accent?’ I understand
it does take some condence for me to say, "Is it my
hair that’s confusing you or is it the fact that I don’t
have an accent." Right, or maybe to them I might not
have an accent…
-R14 [self-race: Dominican and Puerto Rican; street-
race: Black].
Black and Afro-Latina women, in regard, may share
similar experiences of experiencing anti-Blackness during
pregnancy and birth, even when self-reported racial identi-
ties are opposite. Oppositional consequences at the clini-
cal encounter, regarding street-race, further illustrates how
White-dominance (and proximity to Whiteness) via pheno-
type are hegemonic and ever-present.
I am Black and Hispanic. So, when I go to my pre-
natal appointments, they get a double surprise. And
I?m not gonna lie, in a lot of the oces, down here [in
Miami], the Spanish people take over. And they kinda
do favor their own kind. And I don’t speak Spanish.
They see me and they get comfortable, but when I say
I don’t speak Spanish…and then I get talked to a lil
dierently.
-R4 [self-race: Black and Hispanic; street-race: Black]
Yeah, and then here it?s like every single medical oce
has... Except for where I gave birth right now, the sec-
ond time around, which was at [hospital]. Anywhere
else we’ve been, it’s all been majority white-looking
Spanish people, and because we don’t look like that,
we’re not part of a clique. –R14 [self-race: Dominican
and Puerto Rican; street-race: Black]
These results also showed that the similarities (in experi-
ences by those with discordant self/street identities) is more
revealing than the dierences thereof.
2
Perceived-race became a “probe question” and a demographic
question (that was asked after the rst four interviews), particularly
after observing that respondents mentioned the dierence between
self-identity verses perceived-identity (which can yield two dierent
experiences).

704 Maternal and Child Health Journal (2022) 26:700–7071 3
I feel like they do not care about Black women—they
will just let you die. -R24 [self-race: Black; street-race:
Black]
Sharing similar self-reported street-race categories
yield similar lived experiences with race and racism, even
when study participants have dierent self-reported racial
identities.
These ndings also show that while reporting maternal
mortality outcomes are important in the eld, it does not tell
the full story of how race and racism operate during clinical
encounters. For example, even when Black and Afro-Latina
women did not physically “die” during birth, facing a near-
death experience may still occur. Near death experiences
(during birthing) also reveal how racism not only inuences
how birthing care is received (Mullings et al., 2001), but also
if it received on time.
My mother was there and she is a RN [Registered
Nurse] and if she was not there to advocate for me,
they would have left me there to bleed to death.” -R21
[self-race: Black; street-race: Black].
The hospital over-complicated things and over-med-
icated me. I’m hemorrhaging and nobody knows
why—I could have died giving birth. -R3[self-race:
Mixed; street-race: Black].
It is very scary because when I was 19 weeks my vagi-
nal membrane started to rupture…. the doctor gave
me two choices: do surgery or be hospitalized until
25 weeks to save the baby. They gave the run-down of
procedures of all of the dangers that could go wrong
with surgery, like I could rupture my organs or lose my
life. -R7 [self-race: Black; street-race: Black].
Living through (the lived-experience) of the birthing
experience (and the quality of that birth experience) shows
how trauma is racialized and could potentially lead to mater-
nal mortality.
It is hard to talk about birth without facing death. My
infant was stuck at the vaginal opening, which is the
portal between life and death. We both could have
died. -R25 [self-race: Black; street-race: Black]
These ndings show that these nuances would be dicult
to capture in quantitative methods (Charon, 2006; Mishler,
1984) where simply having a variable for race or ethnicity,
fails to capture the lived-experience of race and racism (via
street-race). Thus, the strengths of qualitative methods using,
narrative medicine and phenomenology, further allows for
the deep texture of how structural racism still permeates the
lived experiences of these social categories, to be investi-
gated at the micro level.
The lived experience of high-risk pregnancies is also an
important nding in this study. With regard to the sample
location, South Florida (e.g., zip codes in Metropolitan
Miami) have high prevalence of high-risk pregnancies
among Black women (Adams and Thomas, 2018; Giscombe
et al., 2005). Results showed that while high-risk is con-
ventionally perceived as being due to age (e.g., being over
30 or 35 years old), this is not always the case. This means
that nine of the study participants had high-risk pregnancies,
regardless of age. To clarify, although 10 of the 25 study
participants were over 30 years old age, high-risk pregnan-
cies occurred among 19 of the 25 women.
We need more black-OBGYNs. We just got one in our
area and mostly all of the Black people are using her
because we don’t have anyone like her in our areas.
-R10[self-race: Black; street-race: Black]
Yea, but I feel like she [White female OBGYN] didn’t
give herself chances to listen. I don’t think she opened
up the room for dialogue and there was a lack of com-
prehension on her part. I can understand what she is
telling me, but I don’t think she understood what I was
telling her. – R3 [self-race: Mixed; street-race: Black]
… I also wanted to get a second-opinion about my
gestational diabetes, but the insurance did not cover
second-opinions and the cost for that would have been
$300. My OBGYN was also pregnant at the time of my
birth and she was vulnerable to the more senior male
doctors, which was frustrating, she could not stand
up for me. I felt like I lost her during the delivery. I
didn’t feel included in my birth plan. I went through
my own little hell. -R1 [self-race: Afro-Cuban; street-
race: Black].
This is a critical aspect because South Florida has zip
codes with over-populations of high-risk pregnancies.
Structural burdens fall on Black and Afro-Latinx groups in
these areas (Bell et al., 2006 ; Declerq et al., 2007), where
requested health accommodations (from culturally compe-
tent providers) are scare.
Overall, discord between self-reported race and street-
race (as separate lived experiences) are not shown in the
ndings. Rather, these results illustrate that regardless of
the conation between race and ethnicity, phenotype creates
similar, shared experiences of racism. For instance, although
the study participants self-reported dierent racial identities
and ethnicities, 24 of the 25 women all reported their street-
race as Black; and thus experienced the clinical encounter as
Black women.
I am an Afro-Cuban woman, but because I look Black,
no one assumes that I am Cuban, unless I speak Span-
ish. It is clear that I am perceived dierently when I
am standing next to my White-Cuban colleagues. -R1
[self-race: Afro-Cuban; street-race: Black]

705Maternal and Child Health Journal (2022) 26:700–707 1 3
Whereas self-reporting race and ethnicity is one layer of
the lived-experience of race and ethnicity, being Black-pre-
senting in street-race (through rst-glance visibility), is an
additional complicated intersection. This lived-experience is
a granular nuance that goes far beyond an individual check-
ing “a box” that states “Hispanic” or “Latina,” (e.g., such
as with race variables in secondary datasets). Ultimately,
shared-experiences of racism due to street-race is reective
of the ways in which binary systems have perpetuated harm
for racial groups across the Americas; and even in seemingly
diverse regions, such as South Florida.
Discussion
Race and racism are consequential (Delgado & Stefanic,
2000). Street-race, in my argument, exacerbates these
hegemonic consequences. An intersectional lens (Collins,
1990; Crenshaw, 1991) is salient for exploring the repro-
ductive experiences of Black and Afro-Latina women, with
a specic emphasis on street-race (Lopez et al., 2018). As
Slaughter-Acey (2019) argues “[that] racism [is] a social
determinant of maternal and infant health outcomes [but]
most racial disparities research fails to consider skin color,
our most visible physical attribute, its social meaning and
intersection with race” (2019: 1). In this regard, an inter-
sectional lens acknowledges how racism, gender-based
discrimination, and colorism are upheld through eugenic-
racist belief systems. The argument here is that an intersec-
tional lens must be centered when investigating the institu-
tional foundation of reproductive health in the US medical
establishment.
Anti-Black racism inuences how Black bodies are per-
ceived (Collins, 2004) across all social institutions, including
institutions serving pregnant women (Adams and Thomas,
2018; Bridges, 2011; Mullings et al., 2001; Roberts, 1997).
This relates to gender-based violence and gender-based-rac-
ism toward Black experiences throughout the post-colonial
era (e.g., post-reconstruction); and throughout the Caribbean
and Latin America (Farmer et al., 2006; Newby & Dowl-
ing, 2007; Valdes, 1997). Maternal and reproductive health
institutions have histories that are not objective or without
racist ideologies (McLemore, 2019; Roberts, 1997). One
key point of this is how eugenics during the enslavement
era (and across the Americans) impacted how Black women
had no legal control over reproduction (Dubois, 1905, 1920;
Roberts, 1997). Not only did Black women have no legal
control over their choice to procreate, but they had no legal
control over HOW to give to birth (e.g., or where to give
birth, nor the processes that would enable birth experiences
to be humanized).
Measuring street-race among Black and Afro-Latina
women is critical because it operates as a form of racism,
translating into the internalization of positive or negative
experiences (Banks et al., 2006) during everyday interac-
tions. Hochschild and Weaver (2007) contend that “dark-
skinned Blacks must deal with even more barriers to suc-
cess and happiness than others in their group” (2007: 645).
Accordingly, failure to address colorism and the color-
line (Hunter, 2007) in maternal-reproductive health dispari-
ties, as it relates to the canon of maternal health, is also a
direct microcosm of the institutional arrangements that per-
petuate structural racism in public health and clinical care.
Limitations of this Study
First, one of the limitations of this data collection is lan-
guage. For example, the interviews were conducted in
English as the primary language for consistency across
the analysis. While this limitation is worth mentioning
(since nuances of the lived-experience between English
and Spanish-speakers could be lost in translation), it is also
important to recognize that both languages are neverthe-
less colonial and hegemonic to Black experiences across
the Caribbean and the Americas. Second, this study was not
intended to be generalizable. Rather, the goal of this study
was to better understand the granular details among a small,
sub-population of Black and Afro-Latina in South Florida;
and to explore the intricacies that are often neglected when
conducting studies with larger sample sizes at the national-
level. Third, the data analysis was not conducted by multiple
interviewers (to get at validity). Instead, the interviews were
understood as a dialectical process and interpreted with the
reexivity of the researcher. Lastly, in terms of the street-
race question, the limitation here is that while study par-
ticipants were asked to self-report both their self-identied
race and street-race, such markers did not take into account
other phenotypical markers (e.g., such as hair type and / or
eye color). Black populations, however, are rarely studied
as a non-monolithic group; thus, focusing on Black health
experiences, regardless of hair type and eye color, without
comparison to a standardized reference group, is the core
strength of this study.
Conclusion
Although adverse pregnancy and birthing outcomes among
racial groups have been well documented in the U.S (Bell
et al., 2006; Declerq et al., 2007), the question that remains
is why do maternal and reproductive health disparities per-
sist? Therefore, this study highlights the need for qualitative
methods, such as narrative medicine, when investigating the
nuances of reproductive health among historically vulner-
able populations. Addressing race and racism is urgent in the

706 Maternal and Child Health Journal (2022) 26:700–7071 3
eld, but also updating race measures to include street-race
categories are relevant for capturing the lived experiences
of race and racism (Lee, 2019).
Since phenotype and colorism are by-products of struc-
tural racism, this further provides opportunities for research-
ers to understand how race and racism operate during clini-
cal encounters. Street race, which operates as a social status,
is a core part of an individual’s socialization (Lopez et al.,
2018). These socialization patterns and lessons of skin tone
are learned from childhood, and have long-lasting eects
on how an individual navigates and negotiates social life
in the North American context (Hunter, 2005). Black and
Afro-Latina women, in this vein, are in vulnerable positions,
within patient-provider hierarchies, due to the intersection
of racism, gender, and colorism. This means that while the
provider and patient are both socialized (and racialized) to
partake in implicit racial categorizations (Bonilla-Silva,
2006), the experiences of these categories for patients are
explicit and detrimental.
Future studies should focus on operationalizing street-
race measures in maternal and reproductive health as well
as addressing the need for more theoretical frameworks to
contextualize adverse health outcomes. Now more than ever,
the eld of reproductive health should aim to eradicate the
consequences of structural racism, particularly when Black
and Afro-Latina women are having shared racial experiences
(and near-death experiences), regardless of race and ethnic-
ity?s conation.
Funding Funding for this study was received through a research grant
award obtained from the University of Miami’s Department of Sociol-
ogy and the McKnight Florida Education Fund.
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The American Journal of Bioethics
ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: www.tandfonline.com/journals/uajb20
Expanding Translation: The Case of How Patient
Perceptions and Lived Experiences of Sickle Cell
Disease Can Expand the Translational Justice
Model
Shameka Poetry Thomas
To cite this article: Shameka Poetry Thomas (2025) Expanding Translation: The Case
of How Patient Perceptions and Lived Experiences of Sickle Cell Disease Can Expand
the Translational Justice Model, The American Journal of Bioethics, 25:6, 31-34, DOI:
10.1080/15265161.2025.2498844
To link to this article: https://doi.org/10.1080/15265161.2025.2498844
© 2025 The Author(s). Published with
license by Taylor & Francis Group, LLC.
Published online: 06 Jun 2025.Submit your article to this journal Article views: 22View related articles View Crossmark data
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https://www.tandfonline.com/action/journalInformation?journalCode=uajb20

OPEN PEER COMMENTARIES
The American Journal of Bioethics 31
The American Journal of Bioethics
2025, VOL. 25, NO . 6, 31–34
Expanding Translation: The Case of How Patient Perceptions and Lived
Experiences of Sickle Cell Disease Can Expand the Translational Justice
Model
Shameka Poetry Thomas
Ohio S tate University Wexner M edical C enter
1
Shameka P. Thomas, Faith E. Fletcher, Rachele Willard, Tiara Monet Ranson & Vence L. Bonham (13 Feb 2024): Patient Perceptions on the
Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States, A JOB Empirical Bioethics, DOI:
10.1080/23294515.2024.2302996.
Sickle cell pain is even worse than labor pain. I have
a strike against me as a Black person. Another strike
as a woman…and then sickle cell [disease].
1
Translational justice was recently proposed as a metric of
success to ensure an ethical process of clinical transla-
tional science (Allyse et al. 2025). In this commentary,
my objective here focuses on expanding translation
through the case of patient perceptions of novel genetic
technologies, noninvasive prenatal testing (NIPT) for
sickle cell disease (SCD) and thus, examining how repro-
ductive narratives (Thomas 2022) and lived experiences
can expand the translational justice model. Allyse and
colleagues (2025) defined translational justice as a “proce-
dural and outcomes-based attention to how clinical tech-
nologies move from bench to bedside in a manner that
equitably addresses the values and practical needs of
affected community members, with attention to the needs
of the most morally impacted” (Allyse et al. 2025).
Clinical technologies moving from “bench to bedside,”
can concise a variety of distinct aspects, in which Allyse
and colleagues illustrated as conceptual, empirical, and
nominal dynamics in their Translational Justice Framework
(Allyse et al. 2025). Allyse’s model on the Translational
Justice Framework captures this process across five tenets:
evaluation, identifying problems, navigating approaches,
acknowledging assumptions, and an eventual clinical
implementation. Indeed, these five tenets are seemingly
necessary ingredients in the advancement of new gene
therapies and clinical technologies (Allyse et al. 2025).
What is missing, however, from this novel framework on
translational justice are the insertion of patient percep-
tions and lived experiences.
Critical awareness of SCD and its complex overlap
in reproductive health for women with SCD is being
raised through ongoing empirical studies of NIPT’s
potential advancement to screen for SCD (Thomas
et al. 2023; 2024). SCD is a debilitating monogenic and
autosomal condition that is expected to increase 30%
worldwide by 2050 (Piel et al. 2013). SCD treatments
and screenings are advancing (Piel et al. 2013; Thomas
et al. 2023; 2024), such as advances in NIPT’s potential
capability to screen for SCD through cell-free- DNA,
which is a novel screening tool that is in the experi-
mental phase for clinical implementation (Thomas
et al. 2024). The ugly truth, however, that little is
known about the lived experiences that occur during
the complicated overlap between SCD and reproductive
health for Black women. For instance, it is well known
that Black women in the United States (US) are three
to four times more likely to die from preventable pre-
natal complications during clinical encounters, com-
pared to White women (Adams and Thomas 2018).
Well, maternal mortality is much higher among Black
women with SCD, who are six to ten times more likely
to die from pregnancy and birthing complications com-
pared to women without SCD (American Society of
Hematology 2022; Lubeck et al. 2019).
Figure one illustrates my approach on this consists of
three key considerations (see Figure 1). The first con-
sideration involves how the prerequisite of clinical
implementation should infuse building and cultivating
trust and trustworthiness, particularly in clinical con-
texts where mistrust and power dynamics are systemi-
cally and historically engrained. The second consideration
© 2025 The Author(s). Published with license by Taylor & F rancis Group, LLC.
CONTACT Shameka Poetry Thomas [email protected] Ohio S tate University Wexner M edical C enter, C olumbus, OH, USA.
This is an O pen Access article distributed under the terms of the C reative C ommons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted
use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the
Accepted M anuscript in a repository by the author(s) or with their consent.
https://doi.org/10.1080/15265161.2025.2498844

32 OPEN PEER COMMENTARIES
is that examining patient perceptions and assessing
lived experiences are two distinctly various aspects in
the study design process. The third consideration is that
we must bridge and integrate the worlds of patients to
mitigate being lost in translation or without losing
patients’ standpoint epistemology.
SUGGESTED PREREQUISITES OUGHT TO OCCUR
BEFORE TRANSLATIONAL JUSTICE FRAMING
The first consideration focuses on identifying suggested
prerequisites within translational research before clinical
implementation. In the case of SCD, this means that
assessing patient perceptions and lived experiences are
critical to the fulfillment of the translational justice
framework, as these aspects cultivate building trust and
trustworthiness (Thomas 2022) between patients and sci-
entific/clinical researchers. This is important because the
ideation of trust is often assumed by scientific research-
ers when conducting research on marginalized patients
with racialized genetic conditions (Wilson 2022) as trust
has been intrinsically fractured and unfortunately bro-
ken, that is, if it were ever established. Indeed, trust
alone is not necessarily sufficient (Wilson 2022), as the
historical fabric of scientific medicine is deeply rooted in
the context of harm, fear, colonization, eugenics, and
coercion in the US context (Thomas 2022; Wilson 2022;
Roberts 2000, 2012; Washington 2019). Undoing hun-
dreds of years of historical damage cannot be solved
through one novel framework, but my argument is that
the translational justice framework is perhaps a timely
place to start, particularly if it expands toward integrat-
ing patient perceptions and lived experiences.
ACKNOWLEDGING AND HOLDING SPACE FOR
THE WORLD OF THE PATIENT IS a KEY
DYNAMIC
The second consideration focuses on acknowledging
the existential worlds of patients. Clinical implementa-
tion of NIPT for SCD screening, in my honest per-
spective, is grim without deeply valuing the SCD
patient perceptions and their lived experiences. Based
on my prior empirical investigations of NIPT’s exper-
imental development to screen for SCD through
maternal plasma and cell free-DNA (Thomas et al.
2024), one of the most alarming issues is that women’s
lived experiences of SCD are missing from empirical
studies on NIPT (Thomas et al. 2023). During my
in-depth interview sessions with SCD women, many
Figure 1. Expanding Translation and Suggested Prerequisites in the C ase of Clinical I mplementation of Noninvasive Prenatal Testing
for Sickle C ell Disease.

The American Journal of Bioethics 33
study participants expressed interest in being a part of
data collection. This is contrary to most researcher’s
beliefs that Black groups are not interested in being
study participants (Brown, et al. 2024), when in fact,
Black groups are open to being involved in scientific
research and clinical trials. Nevertheless, just because
Black patients are open to being involved in research
(Brown, et al. 2024; Thomas et al. 2024), it also does
not mean they are without their rightful curiosities of
hesitancy and resistance (Thomas 2022). Study partic-
ipants in my studies on patient perceptions of NIPT
and SCD, for example, still expressed how they their
lived experiences of SCD are neglected. This is not
new. Black women’s health narratives are convention-
ally undermined in the pursuit of scientific research
(Roberts 2000; Washington 2019). In fact, this neglect
is historical and persists in present-day research pro-
cesses; and this reduction and dismissal is amplified
due to funding cuts, budget cuts, and terminol-
ogy cuts.
EXAMINING PATIENT PERCEPTIONS AND
ASSESSING LIVED EXPERIENCES ARE TWO
DIFFERENT DYNAMICS
Patient perceptions and lived experiences (in the case
of SCD and reproductive health) are substantively
interconnected, as both dynamics are patient-centered
and patient-focused. However, examining patient per-
ceptions and assessing lived experiences are two dif-
ferent approaches in research study designs. Figure
one, is my depiction of this concept, in which my
argument here is that:
1. Examining patient perceptions requires a singular
focus on the patients’ views of a particular clini-
cal technology (i.e., NIPT for SCD screening).
2. Evaluating patient’s live experiences, however,
requires a broader approach for capturing how
a patient’s social landscape shapes their percep-
tion of clinical encounters and clinical technol-
ogies, altogether.
3. Both approaches are necessary suggestive pre-
requisites for building trust and trustworthiness
prior to clinical implementation.
In other words, analyzing patient perceptions of a
genetic technology instead focus on the patient’s inter-
pretation of the clinical technology at hand within a
human subject’s protocol. Though patient perceptions
are critical, this is not to be confused with under-
standing a patient’s lived experience. Investigating
lived experiences are more expanded. This means that
the lived experience not only investigates the patient’s
world but also holds space for the lived experience as
a legitimate form of scientific knowledge. This also
means that through an understanding of the lived
experience of the patient, we can see how the patient’s
perception of a said clinical technology takes shape.
In other words, the lived experience informs the
patient’s perception of a clinical technology. Not the
other way around.
NEGLECTING THE HUMAN EXPERIENCE OF THE
PATIENT IS a FORM OF DISRESPECT
Investigating patient perceptions and lived experiences
are prerequisites that can build potential trust because
it reorients patients, clinicians, and scientific research-
ers back to the heartbeat the human experience.
Neglecting the human experience of patients further
perpetuates disrespect, as mistrust, unfortunately, can
be (and often is) the hardest form of efficacy to
restore. Justice cannot happen without restoration of
trust. Restoration of trust, in this case, requires deep
seated intentionally at every level of the research pro-
cess. And this is largely due to the historical deficit of
broken-trust and brokenness that the biomedical
enterprise ascribed on Black bodies in the name of
innovation (Roberts 2012).
Fostering trust, nevertheless, is utterly serious
because the lack of an attempt can be counter to eth-
ics. Thus, the prerequisite of clinical implementation,
specifically speaking in terms of the overlapped inter-
sections of SCD and reproductive health, must have a
suggested pathway that can hold space for the world
of the patients almost independent of the clinical
implementation itself. This means that if SCD patients,
such as Black women and their families, are invisible
in empirical research, then we as researchers must be
aware of how such a neglected approach can impose
additional harm. Imposing harm, thus, can take shape
in many forms. For instance, neglecting the patients’
world, on the surface we can appear to be expanding
translational justice, but could run the risk of translat-
ing perpetual dehumanization.
EXPANDING TRANSLATIONAL JUSTICE
REQUIRES PREREQUISITES
Building trust and trustworthiness, however, is not an
easy feat. But just because building trust is not easy,
does not mean researchers should opt out of its impor-
tance. Skipping ingredients, such as prerequisites in
translational clinical science are harmful. Expanding

34 OPEN PEER COMMENTARIES
also means seeing and hearing the narratives of patients
who are the most marginalized and decentered in bio-
medicine (Thomas 2022). SCD women patients, in my
research studies for instance, reiterated that they joined
my studies because they simply wanted to feel seen
and heard—for their health condition—and beyond
their condition. Feeling seen and heard, for them, thus
translated into “potential” steps toward value, efficacy,
and potential trust. I say “potential” trust, because in
clinical contexts where trust is already historically and
ongoingly broken, I had to be thoughtful (as a
researcher) not to assume trust because assuming a
patient’s trust can be another form of entitlement.
A step in right the direction requires appreciation
for this type of introspection with the patient’s world in
mind. It is not enough to assume patient’s trust. As it
is also not beneficial to omit such key ingredients in
efforts to advance scientific innovation. Indeed, expand-
ing translation is a step in the right direction, and the
new translational justice framing could also be a quality
step for the field of translational science and clinical
implementation. Expanding translation, however,
requires a plan to building potential trust and trustwor-
thiness in clinical contexts where so much historical
and contemporary damage has already been done.
The patient’s standpoint, especially minoritized
patients, offer an insight that is deeply rich and robust.
But, to tap into the worlds of patients requires prereq-
uisites. Expanding translation toward these prerequisites
not only potentially fuels ethical translation science but
can also foster sustainable clinical implementation—if
conducted with the patients’ world as its heartbeat.
DISCLOSURE STATEMENT
No potential conflict of interest was reported by the
author(s).
FUNDING
The author(s) reported there is no funding associated with
the work featured in this article.
ORCID
Shameka Poetry Thomas http://orcid.
org/0000-0002-5225-0090
REFERENCES
Adams, C., and S. P. Thomas. 2018. Alternative prenatal
care interventions to alleviate Black/White Maternal and
Infant Health Disparities. Sociology Compass 12 (1), 49.
doi: 10.1111/soc4.12549.
Allyse, M. A., P. Agam, Y. Bombard, R. Feys, M. Horstmann,
A. Kokayi, R. Isasi, K. M. Meagher, M. Michie, K.
Musunuru, et al. 2025. Building better medicine:
Translational justice and the quest for equity in US
healthcare. The American Journal of Bioethics 25 (6):11–
25. doi: 10.1080/15265161.2025.2457713.
American Society of Hematology. 2022. Pregnancy compli-
cations in women with sickle cell disease. ScienceDaily.
www.sciencedaily.com/releases/2015/03/150323111858.htm
(accessed December 7, 2022).
Brown, K. K., S. P. Thomas, R. M. Brothers, and Y. Liao.
2024. “Lord knows what’s being done with my blood!”:
Black women’s perceptions of biospecimen donation in
clinical research. Journal of Racial and Ethnic Health
Disparities doi: 10.1007/s40615-024-02015-y.
Lubeck, D., I. Agodoa, N. Bhakta, M. Danese, K. Pappu, R.
Howard, M. Gleeson, M. Halperin, and S. Lanzkron.
2019. Estimated life expectancy and income of patients
with sickle cell disease compared with those without sick-
le cell disease. JAMA Network Open 2 (11):e1915374. doi:
10.1001/jamanetworkopen.2019.15374.
Piel, F. B., S. I. Hay, S. Gupta, D. J. Weatherall, and T. N.
Williams. 2013. Global burden of sickle cell anaemia in
children under five, 2010–2050: Modelling based on de-
mographics, excess mortality, and interventions. PLoS
Med. 10 (7):e1001484. doi: 10.1371/journal.
pmed.1001484.
Roberts, D. 2000. Killing the Black body. New York, NY:
Vintage Books.
Roberts, D. 2012. Fatal invention: How science, politics, and big
business re-create race in the twenty-first century. New Press.
Thomas, S. P. 2022. Trust also means centering black wom-
en’s reproductive health narratives. In A critical moment
in bioethics: Reckoning with anti-black racism through in-
tergenerational dialogue, ed. Faith E. Fletcher et al., spe-
cial report, Hastings Center Report 52, no. 2 S18–S21.
doi: 10.1002/hast.1362.
Thomas, S. P., F. E. Fletcher, R. Willard, T. M. Ranson, and
V. L. Bonham. 2024. Patient perceptions on the advance-
ment of noninvasive prenatal testing for sickle cell dis-
ease among Black Women in the United States. The
American Journal of Bioethics Empirical Bioethics 15
(2):154–63. doi: 10.1080/23294515.2024.2302996.
Thomas, S. P., M. A. Keller, T. Ranson, and R. E. Willard.
2023. Patient perspectives of noninvasive prenatal testing
among Black women in the United States: A scoping re-
view. BMC Pregnancy and Childbirth 23 (1):183. doi:
10.1186/s12884-023-05423-w.
Washington, H. A. 2019. Medical apartheid. New York, NY:
Random House.
Wilson, Y. 2022. Is trust enough? Anti-Black racism and the
perception of Black vaccine “hesitancy”. Hastings Center
Report 52 (Suppl 1):S12–S17. doi: 10.1002/hast.1361.

S18 March-April 2022/HASTINGS CENTER REPORT
A Black woman, hemorrhaging after giving birth, tells
her story: “My mother was there, and she is a [registered
nurse] and if she was not there to advocate for me, they
would have left me there to bleed to death.”
1
A
dverse pregnancy and birthing outcomes among
Black women in the United States have been well
documented.
2
It is commonly noted that Black
women are three to four times more likely than White
women to die from preventable prenatal complications,
but new evidence collected from vital records suggests
that maternal mortality rates may be even higher among
Black women due to unreported prenatal complications.
3

Despite these disturbing statistical realities, there is lit-
tle research examining how structural racism perpetu-
ally places Black women in dangerous birthing situations
during clinical encounters. Neglecting to center the nar-
ratives of Black women tells an incomplete story of re-
productive health disparities, and this framing can shame
Black women and also blame them for being complicit in
their own adverse health outcomes. Ultimately, when it
comes to reproductive health disparities, which women’s
stories are deemed worthy of being told, and who is lis-
tening when stories about Black women’s pregnancy and
birthing experiences are told? Who is deemed worthy of
telling the stories? And whose narratives are centered in
reproductive medicine and bioethics?
In “Is Trust Enough? Anti-Black Racism and the
Perception of Black Vaccine ‘Hesitancy’” in this special
report, Yolonda Wilson challenges practitioners and
scholars to question whether the examination of trust
regarding Black groups “can overshadow the structural
injustice that operates in the background, and often the
foreground, of health care contexts.”
4
Wilson’s piece and
additional work
5
on vaccine hesitancy in relation to Black
populations stimulate discussion about hesitancy in the
context of Covid-19. My argument, however, connects
the notion of hesitancy to patient blame, particularly
in the field of maternal and reproductive health. In the
context of clinical settings, is it enough for Black women
to trust giving birth in a reproductive health care system
where maternal morbidity and mortality are statistical-
ly high due to structural racism?
6
Are we unequivocally
considering (and centering) the narratives and lived ex-
periences of Black women giving birth in the context
of Covid-19 and beyond? Or are Black women giving
birth in a fetus-centered reproductive health system
7

that neglects their lived experiences and, when adverse
health outcomes occur, blames them for health behaviors
rather than blaming the structural inequities that make
the women susceptible to such outcomes? Blaming Black
women in such cases stems from a historically racist so-
cial structure that perpetuates societal mistrust of Black
women’s bodies.
8
Mistrust, in my perspective, is a twofold
phenomenon connected to patient blame. First, when
practitioners and researchers fail to recognize and under-
stand the social context of health problems, minoritized
groups are socialized to mistrust their own bodies; sec-
ond, and as a result of the first step, minoritized groups
can come to mistrust medical institutions and medical
institutions come to mistrust patients.
Trustworthiness Requires Acknowledging (and
Dismantling) Blame
T
o interrogate trust and trustworthiness, we first need
to examine blame.
9
In The Souls of Black Folk, W. E.
B. Du Bois discusses how Black Americans are stigma-
tized and blamed as society’s problem. He posed his argu-
ment as a question: “How does it feel to be a problem?”
10

My argument extends Du Bois’s, asking, how does it feel
to give birth to the problem? Black women were histori-
cally targeted as the racial group of women who not only
were society’s problem but also the reproducers or breed-
ers of society’s problem. Blaming Black women is, then,
not a new phenomenon; reproductive injustice has long
been upheld by blaming marginalized groups to substan-
tiate reproductive stratification.
11
Reproductive stratifica-
tion was guided by racist notions in which White women
were (and are) encouraged to reproduce, whereas Black
women’s reproductive capacities were either transactional
(to uphold the capitalistic structure of chattel slavery) or
were discouraged (through coercive abortions, enforced
sterilization, and obstetric violence).
12
Blame translated
into an implicit and explicit reprimand of Black wom-
en’s reproductivity that commodified and devalued the
procreation of Black populations. Consider, for instance,
Commentary Trust Also Means Centering Black
Women’s Reproductive Health Narratives
by SHAMEKA POETRY THOMAS
Shameka Poetry Thomas, “Trust Also Means Centering Black Women’s
Reproductive Health Narratives,” in A Critical Moment in Bioethics:
Reckoning with Anti-Black Racism through Intergenerational Dialogue, ed.
Faith E. Fletcher et al., special report, Hastings Center Report 52, no. 2
(2022): S18-S21. DOI: 10.1002/hast.1362

S19SPECIAL REPORT: A Critical Moment in Bioethics: Reckoning with Anti-Black Racism through Intergenerational Dialogue
that “the crushing weight of slavery fell on Black women.
Under it there was no legal marriage, no legal family, no
legal control of [childbearing].”
13
In the United States’ re-
productive health system in the nineteenth and twentieth
centuries, clinical procedures such as caesarean sections
and sterilizations exploited Black women in the name of
medical experimentation without consent or anesthesia.
14

These historical realities were also upheld by ideologies
that Black people did not feel pain, a notion that was
purportedly scientifically proven through the rationale of
eugenics.
Extending Wilson’s argument to the field of reproduc-
tive medicine and reproductive ethics means reimagining
trust with an antiracism lens that centers Black women’s
reproductive health narratives across multiple scholarly
projects, such as acknowledging (and dismantling) blame,
centering Black women in scientific investigations, and
centering Black women in narrative medicine. In my
early-career work, I apply concepts of narrative medicine
to highlight that Black women’s narratives and lived ex-
periences of race, racism, and reproductive health are not
only neglected in clinical encounters but also nearly ab-
sent from the medical literature and in clinical training
and education. Failing to capture how the ethical failures
and history of the U.S. reproductive health care system
contribute to the lived experiences of racism puts Black
women in danger in the clinical encounter.
15
Structural
racism perpetuates the decentering of Black health ex-
periences, and trust on the part of Black women is not
enough, specifically if their lived experiences and social
realities are not centered before, during, and after each
clinical encounter.
If we are truly committed to addressing reproductive
health inequities among Black women, we cannot turn
a blind eye to how the U.S. medical institution is sus-
tained by the atmosphere of blame, or the reproductive
health system will continue to fail Black women and their
families. Interrogating (mis)trust, in other words, further
means interrogating and dismantling blame, particularly
when the U.S. health system has a stark history of dis-
trusting and devaluing Black people, which in turn per-
petuates mistrust by socializing Black groups to mistrust
themselves. One step toward dismantling the racist heri-
tage of patient blame—blame exacerbated by sexism, clas-
sism, and other forms of oppression—involves amplifying
my argument in reproductive bioethics. Dismantling
harmful and normative framing processes also means, in
my view, calling forth the legacy of Sister Song’s 2010 na-
tional demonstration to trust Black women
16
in framing
for reproductive justice.
Trusting Black Women Is the Process of
Centering Black Women
Centering Black women in research. What does it
mean to trust Black women? Reproductive justice and re-
productive ethics should challenge us to reimagine trust
as a safe space in the center without constant method-
ological

comparison
17
of Black women to White women.
Trust is a process. For clinicians, earning trust thus means
acknowledging that hesitancy about participating in
medical procedures is a normal part of the process due to
decades of historical oppression and constant decentering
from mainstream feminism.
18
For bioethics, the prereq-
uisite to figuring out (mis)trust substantively means that
centering the lived experience of structural racism and
health disparities is critical.
Too often, the canon of any given research discipline,
including bioethics, centers White groups as the standard
reference group (for example, via empirical research that
studies White people and then generalizes its findings)
and thus homogenizes the experiences of all people, in-
cluding Black people, as though they were like those of
White populations. White scholars, for example, are so-
cialized through discourses and knowledge systems that
understand Blackness via decentering. Therefore, I con-
centrate on Black women as their own “reference” group,
due to the need to be restrictive when examining vulner-
able populations whose health and lives are constantly
compared (and contrasted) to the experiences and out-
comes of White populations.
What does this mean when investigating Black wom-
en’s lived experiences? Black women (both as scientific
investigators and as study participants) are socialized to
experience decentering through White discourses and
White gazes.
19
In this vein, both White and Black groups
are socialized to perceive Blackness via marginality and
otherness, and this hegemonic racism continues to fail the
scientific enterprise on a collective level. Consider these
questions for the field: Why is centering Black women
Narrative medicine, which involves listening to health narratives
(or the patient’s lived experience), is a research framework that can
be used to avoid pathologizing Black women.

S20 March-April 2022/HASTINGS CENTER REPORT
portrayed as problematic, narrow, or limited among sci-
entists who claim to strive for reproductive equity? Why
can’t Black women be the experts about (and the stan-
dardized referents for) their own Black bodies and health
narratives? Why aren’t Black women deemed worthy
enough to be the center? What is it about centering Black
people that causes some White people to feel excluded?
Centering Black women in narrative medicine. Why,
if at all, center Black women’s health narratives? First, as a
Black woman, I experience the process of centering Black
women in a field of research that is built on the historical
exclusion of Black women as heavy work—because I am
both the object and the subject. To even ask why Black
women’s health narratives should be centered increases
this heaviness. Failing to acknowledge the structural bur-
den that many Black researchers (and Black study partici-
pants) must navigate also contributes to the immensity
of this mistrust. The history of narrative medicine stems
from the epistemology of postmodernism and phenom-
enology.
20
Since phenomenologists were also predomi-
nately White scholars, those who use the approaches of
narrative medicine fail to consider that Black women
were treated as the property of White slave owners and
thus were not historically viewed as “human” enough to
express a lived experience.
21
In other words, researchers
who use these methods should be sensitive to and aware
of the historical implications of these approaches, particu-
larly when interviewing minoritized groups such as Black
women. This is especially important because neglecting
to center the wide range of Black experiences perpetuates
ongoing homogenization.
To center Black women, one must first see them. To
see Black women, one must also acknowledge the ways
in which Black bodies are both seen (and unseen) dur-
ing clinical encounters. To clarify, I am not referring to
centering as a means of bringing marginalized groups to
what is traditionally and discursively known as the center
(or mainstream discourse). Centering, in my perspective,
is rather a process of discourse expansion that enables
multiple locations of knowledge and lived experiences to
coexist. Narrative medicine, which involves listening to
health narratives (or the patient’s lived experience), is a
research framework that can be used to avoid pathologiz-
ing Black women. In my interactions with Black women
while conducting qualitative research, my presence (as a
Black woman) seemed to reduce their rightful mistrust of
participating in scientific investigations. The majority of
my study participants expressed that my presence made
the research look more trustworthy and seemed to re-
duce their own mistrust about participating in scientific
investigations. Thus, I realized that the Black women in
my encounters willingly desired to contribute to the de-
velopment of ethical scientific research and altruistically
wanted to participate in cultivating reproductive health
reform. A distinguishing factor, perhaps, is that the Black
women in my studies thanked me for simply seeing them.
Instead of asking, why center Black women?, it is bet-
ter to ask the more impactful question, how can Black
women be centered effectively? My first observation is
that Black women request to have culturally (and struc-
turally) competent obstetricians-gynecologists, midwives,
and health providers (who look like them). My second
observation is that Black women also want to see sustain-
able and equitable social justice in the field of reproduc-
tive health, particularly led by scientific investigators who
are also Black women.
Reimagining trust and trustworthiness must include
a discourse around anti-Black racism that reinforces the
fact that Black women are not specimens, variables, re-
spondents, or experiments. Black women are people.
And as people, they have varying feelings, concerns, pain,
joy, and legitimate human experiences and are worthy of
quality care and ethical scientific processes. Therefore,
one prerequisite to the eradication of adverse maternal
health outcomes is to refrain from blaming Black women
for the lived experience of health disparities; another pre-
requisite is to contextualize the personal health decisions
Black women often have to make under the constraints
of structural inequities. Trusting medical systems alone
is ultimately not enough for historically marginalized
groups, particularly if patient blame and decentering are
the perpetual framing.
Disclaimer
The perspectives expressed in this commentary are my
own. No statement in this commentary should be con-
strued as an official position of the National Human
Genome Research Institute, National Institutes of Health,
or Department of Health and Human Services.
1. S. P. Thomas, “Street-Race in Reproductive Health: A
Qualitative Study on the Pregnancy and Birthing Experiences
among Black and Afro-Latina Women,” Journal of Maternal and
Child Health (July 16, 2021): doi:10.1007/s10995-021-03188-2.
2. C. Adams and S. P. Thomas, “Alternative Prenatal Care
Interventions to Alleviate Black/White Maternal and Infant Health
Disparities,” Sociology Compass 12, no. 1 (2018): doi:10.1111/
soc4.12549.
3. M. F. MacDorman et al., “Racial and Ethnic Disparities in
Maternal Mortality in the United States Using Enhanced Vital
Records, 2016-2017,” American Journal of Public Health 111, no.
9 (2021): doi:10.2105/AJPH.2021.306375.
4. Y. Wilson, “Is Trust Enough? Anti-Black Racism and
the Perception of Black Vaccine ‘Hesitancy,’” in A Critical
Moment in Bioethics: Reckoning with Anti-Black Racism through
Intergenerational Dialogue, ed. F. E. Fletcher et al., special report,
Hastings Center Report 52, no. 2 (2022): S12-S17.
5. L. M. Bogart et al., What Contributes to COVID-19 Vaccine
Hesitancy in Black Communities, and How Can It Be Addressed?

S21SPECIAL REPORT: A Critical Moment in Bioethics: Reckoning with Anti-Black Racism through Intergenerational Dialogue
(Santa Monica, CA: RAND Corporation, 2021), https://www.
rand.org/pubs/research_reports/RRA1110-1.html.
6. Thomas, “Street-Race in Reproductive Health”; Adams and
Thomas, “Alternative Prenatal Care Interventions to Alleviate
Black/White Maternal and Infant HealthDisparities”; MacDorman
et al., “Racial and Ethnic Disparities in Maternal Mortality in
the United States Using Enhanced Vital Records, 2016-2017”;
Wilson, “Is Trust Enough?”
7. K. Bridges, Reproducing Race: An Ethnography of Pregnancy
as a Site of Racialization (Berkeley, CA: University of California
Press, 2011).
8. D. Roberts, Killing the Black Body (New York: Routledge
Press, 1997).
9. M. McLemore, “What Blame-the-Mother Stories Get Wrong
about Birth Outcomes about Black Moms,” Center for Health
Journalism, March 14, 2018, https://centerforhealthjournalism.
org/2018/02/18/what-blame-mother-stories-get-wrong-about-
birth-outcomes-among-black-moms.
10. W. E. B. Du Bois, The Souls of Black Folk (Chicago: A. G.
McClurg: 1903), 2.
11. R. Solinger, Pregnancy and Power: A Short History of
Reproductive Politics of America (New York: NYU Press, 2005).
12. F. Diaz-Tello, “Invisible Wounds: Obstetric Violence in the
United States,” Reproductive Health Matters 24, no. 47 (2016): 54-
64.
13. W. E. B. Du Bois, Darkwater: Voices from Within the Veil
(1920; New York: Dover, 1999), 98.
14. K. Wailoo, “Historical Aspects of Race and Medicine: The
Case of J. Marion Sims,” Journal of the American Medical Association
320, no. 15 (2018): 1529-30.
15. F. E. Fletcher et al., “How Can the Experiences of Black
Women Living with HIV Inform Equitable and Respectful
Reproductive Healthcare Delivery?,” AMA Journal of Ethics 23, no.
2 (2021): E156-65.
16. “SisterSong,” Trust Black Women, 2018, https://trustblack-
women.org/our-roots.
17. T. Zuberi and E. Bonilla-Silva, White Logic, White Methods:
Racism and Methodology (Lanham, MD: Rowman & Littlefield,
2008).
18. R. Hamad, White Tears, Brown Scars: How White Feminism
Betrays Women of Color (New York: Catapult, 2020).
19. T. Morrison, The Source of Self-Regard: Selected Essays,
Speeches, and Meditations (New York: Alfred A. Knopf, 2019).
20. R. Charon, Narrative Medicine: Honoring the Stories of Illness
(New York: Oxford University Press, 2006).
21. S. R. Toliver, Recovering Black Storytelling in Qualitative
Research: Endarkened Storywork (London: Routledge, 2021);
Roberts, Killing the Black Body; Du Bois, Darkwater; Zuberi and
Bonilla-Silva, White Logic, White Methods.
Commentary Black Feminist Bioethics:
Centering Community to Ask Better
Questions

by JENNIFER ELYSE JAMES
I
n an article in this special report, Yolonda Wilson
beautifully and powerfully articulates the many rea-
sons that the question, “Why don’t Black people
trust?” is insufficient.
1
I argue that instead we—bioethi-
cists specifically and health care researchers and clinicians
more broadly—should be asking, In what ways is bio-
medicine failing Black people? and, How can we trans-
form our systems of research and clinical care to better
meet the needs of communities who have been marginal-
ized from and excluded by biomedicine?
The pandemic has only illuminated and deepened
the structural and moral failings of the United States’
health care system and public health infrastructure,
and, as Wilson asserts, “a Black feminist bioethics may
be precisely the foundational bioethical approach that
is needed” to address it.
2
Black feminist approaches to
knowledge production articulate so clearly the work that
bioethics should be doing: centering patients’ lived ex-
perience; facilitating dialogue among patients, providers,
and researchers; advancing knowledge based in an ethic
of caring; and ensuring that we are accountable to Black
patients.
3
Centering Lived Experience in Discussions of
Trust
W
ilson describes two oft-cited reasons for mistrust:
historical injustice and current practice. I am in
complete agreement that we overemphasize the role of
Jennifer Elyse James, “Black Feminist Bioethics: Centering Community to
Ask Better Questions,” in A Critical Moment in Bioethics: Reckoning with
Anti-Black Racism through Intergenerational Dialogue, ed. Faith E. Fletcher
et al., special report, Hastings Center Report 52, no. 2 (2022): S21-S23.
DOI: 10.1002/hast.1363

NEWSLETTERNEWSLETTER
BEYOND GLOBAL HEALTH
ISSUE 01 | FEBRUARY 2025
A NOTE FROM THE EDITORS
Thank you to everyone who believed in
this project from its earliest inception.
Your support has been instrumental in
bringing this vision to life. We officially
launched the Beyond Global Health
(BGH) a year ago, creating a platform
where the intersection of art and global
health could be explored in meaningful
ways. Since then, we have invited
individuals from diverse backgrounds
who are passionate about creativity,
equity, and justice to contribute to this
mission. Together, we are working to
amplify marginalized voices and foster
a more expansive, inclusive space for
critical dialogue on decolonization. Now
more than ever, we recognize the need
to reshape perspectives, challenge
inequities, and inspire collaborative action
for a better, more equitable future. We are
deeply grateful for the contributions and
engagement of this growing community,
and we look forward to continuing this
important work together.
WHAT DOES GLOBAL
HEALTH MEAN TO YOU?
This year we had two calls for
submissions. Works from our first call
include submissions from India, Peru,
Ghana, and Poland. We are hoping to
continue this momentum and with our
current call, we are asking contributors
to submit poetry, photos, and/or art that
explore what global health means to
you.
We invite submissions from researchers,
health professionals, artists, study
participants, and anyone passionate about global health. Share your insights, experiences, and creative expressions with a global audience, contributing to a dialogue that bridges science and art to inspire change.
Visit
BEYONDGLOBALHEALTH.ORGBEYONDGLOBALHEALTH.ORG
to submit your work today! Deadline for
all submissions is March 14, 2025.
IN THIS IN THIS
ISSUEISSUE
• What does global health
mean to you?
• Poetry in Focus - June
Jorden (1936-2002)
• What is poetic inquiry and
how can you use it in your
research?
• The power and limitations
of using AI for art
• Indigenous voices in verse
• Remembering Nikki
Giovanni (1943-2024)
• Maintaining our wellness in
global health work
• Viewpoint from emerging
global health leaders
• Meet the BGH Team
- BGH TEAM
Celebrating 1 year at BGHCelebrating 1 year at BGH

ISSUE 01 | FEBRUARY 2025BEYOND GLOBAL HEALTH NEWSLETTER 32
WE ARE THE
ONES WE HAVE
BEEN WAITING
FOR.
We would like to highlight the
June Jordan’s poem she wrote to
commemorate the 40,000 women and
children who protested the anti-pass
law in South Africa on August 9, 1956.
This aparthied law required all Blacks to
carry passbooks, or dompas, at all times
limiting their freedom of movement.
“Poem for South African Women” was
presented to the United Nations in 1978
during the International Day of Solidarity
with the Struggles of Women in South
Africa and Namibia. Her poem connected
art with activism, supporting the anti-
apartheid movement.
June Jordan was a fierce advocate for
human rights and her work tacked topics
that were fundamental struggles of her
time including civil rights, women’s rights,
and sexual freedom. Drawing from her
own lived experiences, her poetry creates
an intimate space that fosters deep,
personal connections with readers.
In 1991, during her tenure at the
University of California-Berkeley, Jordan
founded Poetry for the People (P4P), a
program dedicated to teaching poetry
to underrepresented and underserved
communities, empowering them to
find their voices through art and self-
expression, particularly in communities
of color.
POETRY IN FOCUS
June Jordan (1936-2002) was a Jamaican American poet, essayist, educator and activist
WORDS BY June Jorden
BLACK ENGLISH
or African American Vernacular English (AAVE) was often
used by June Jordan in her poetry, as she believed it
was essential for authentically capturing Black culture,
community, and experience. The use of Black English
also serves as a political statement, challenging linguistic
hierarchies and asserting the validity and richness of
Black expression.

The use of vernaculars (the distinct language of a group
or class) can be tricky in poetry or other written works
and requires a deep understanding of the community, as
it reflects their values, history, and worldview. It is easy
to impose assumptions about language use, perpetuating
stereotypes or caricatures of a group. Thus, the writer
must respect the authenticity and nuance of this voice.
Vernaculars should also be used with a clear purpose,
rather than as mere decoration—does it bring depth to
your piece? Finally, be sure to consult and collaborate
with members of the community to ensure accuracy and
respect.
POEM FOR SOUTH
AFRICAN WOMEN
Our own shadows disappear as the feet of thousands
by the tens of thousands pound the fallow land
into new dust that
rising like a marvelous pollen will be
fertile
even as the first woman whispering
imagination to the trees around her made
for righteous fruit
from such deliberate defense of life
as no other still
will claim inferior to any other safety
in the world
The whispers too they
intimate to the inmost ear of every spirit
now aroused they
carousing in ferocious affirmation
of all peaceable and loving amplitude
sound a certainly unbounded heat
from a baptismal smoke where yes
there will be fire
And the babies cease alarm as mothers
raising arms
and heart high as the stars so far unseen
nevertheless hurl into the universe
a moving force
irreversible as light years
traveling to the open
eye
And who will join this standing up
and the ones who stood without sweet company
will sing and sing
back into the mountains and
if necessary
even under the sea
we are the ones we have been waiting for
if necessary
even under the sea
we are the ones we have been waiting for
“WE MUST MAKE
LANGUAGE
ACCOUNTABLE TO
THE TRUTHS OF OUR
EXPERIENCE.”
Poetry for the People (P4P), founded by June
Jordan, was rooted in her unwavering belief in the
transformative power of words to connect people and
drive change. P4P continues to this day at UC Berkley
and has spread to various communities, where alumni
draw from Jordan’s pedagogy to conduct their own
workshops. Here are the guiding principals of P4P that
can be applied universally:
1. Students will not take themselves seriously, unless
we who teach them honor and respect them in
every practical way that we can
2. Words can change the world and save our lives.
3. Poetry is the highest art and the most exacting
service devoted to our most serious, and our most
imaginative, deployment of verbs and nouns on
behalf of whatever and whoever we cherish.
- June Jordan, 1978
June Jordan, ca. 1970.
Photograph by Lloyd W.
Yearwood
2014.150.8.37
P4P GUIDING
PRINCIPLES
- JUNE JORDAN

ISSUE 01 | FEBRUARY 2025BEYOND GLOBAL HEALTH NEWSLETTER 54
WHAT IS POETIC
INQUIRY?
IN 2009, MONICA PREDERGAST POSED A SIMILAR
QUESTION IN HER ARTICLE, “POEM IS WHAT?”
In the broadest terms, poetic inquiry is
art-based qualitative research using poetry
as a way to capture and analyze data,
in hopes of creating a more immersive,
embodied, and authentic human
experience. Furthermore, when successfully
implemented, allows researchers to convey
their findings in emotive ways that foster
deeper reflection. Poetic inquiry can
also amplify the voices of marginalized
communities and to connect research
with a wider audience, serving as a
powerful call to action. It is found across
a number of interdisciplinary fields such
as anthropology, nursing, psychology,
education, women’s studies, global health,
and much more.
Prendergast also outlined three main ways
in which poetic inquiry is used, depending
on who is the engaged voice. These
include:
• LITERATURE-VOICED POEMS:
Taken from theory or literature
• RESEARCHER-VOICED POEMS:
Written from the researcher’s point-
of-view and observations, often using
field notes, journal entries, or reflective
writings. This type of poetic inquiry
is the most commonly employed in
research.
• PARTICIPANT-VOICED POEMS:
Co-created poetry written directly by
participants as participatory action
research or from field transcripts.
As a researcher, after defining the source of
the poetry, it is imperative to consider who
is the audience and for what purpose is this
methodology being employed? Conversely,
as a poet, it is important to ask, “What is
the function of the poem and how should
it be crafted for my intended effect?” More
so, “Is this poetry any good?” There lies a
distinct intersection between art, research
and poetry that balances scientific rigor
with artistic expression and craft.
Once you have grappled with some of these
more thought-provoking methodological
issues of using poetic inquiry, there are
various ways to apply it in your research.
One approach is through ekphrastic poetry,
where the poem serves a commentary or
a response to your research. Alternatively,
you might use certain phrases, quotes, and
impressions from transcripts, rearranging
them to form a literary collage, often
referred to as found poetry. You could also
engage in poetic analysis, using poetry
as means to identify and expand upon
the themes of your research. Additionally,
experimenting with different poetic forms
can bring new meaning to your work – such
as the sestina, where every end word of the
first stanza are repeated in a set pattern
across the subsequent stanzas. Or better
yet, create your own poetic form. Faulkner
provides various step-by-step examples of
how to engage with your research using
poetic inquiry in her book Poetic Inquiry:
Craft, Method and Practice through what
she refers to as “exercising the poetic
muscle.”
For both seasoned researchers and those
new to the methodology, poetic inquiry
offers a space where creativity and
research converge, challenging traditional
approaches to knowledge creation. By
embracing poetic inquiry, researchers are
invited to engage with their data in ways
that are both nuanced and deeply emotive.
This methodology fosters connection with
the voices, experiences, and themes that
the research seeks to highlight. It can also
open the door to unexpected insights and
offer a richer understanding of our findings.
I encourage others to explore poetic inquiry
not only as a method for analysis and
representation but also as a way to expand
the boundaries of how we understand and
share knowledge.
QUESTIONS TO
CONSIDER
• Who is the audience?
• For what purpose is
this methodology being
employed?
• What is the function of
the poem?
•
How should it be
crafted for my intended
effect?
• IS THIS POETRY ANY
GOOD?
FOR A STUDENT
WHO USED AI TO
WRITE A PAPER
I CAME ACROSS THIS POEM BY JOSEPH FASCANO ON
POETS.ORG AND IT PERFECTLY CAPTURES BOTH THE
CAPABILITIES AND LIMITATIONS OF AI, EMPHASIZING
THE UNIQUELY HUMAN EFFORT AND FULFILLMENT
THAT THE ACT OF CREATING BRINGS.
Now I let it fall back
In the grasses.
I hear you. I know
This life is hard now.
I know your days are precious
on this earth.
But what are you trying
to be free of?
The living? The miraculous
task of it?
Love is for the ones who love the work.

IS AI
CONSIDERED
ART?
BY LISA LABITA WOODSON, PhD
1

Although BGH doesn’t currently accept Articifical
Intelligence (AI) generated art, it is worth a deep dive.
There is current debate around the central idea of what
constitutes art? AI is a reflection of contemporary
society, pulling from what has been created and available
through the internet. Yet, these are merely composites
of other artist representations in regurgitated, reduced
and rearranged form fitted to prompts provided through
search engine optimization or SEO. Thus, AI acts like
a mirror, imitating the works created by humanity for
humanity. As the famed Pablo Picasso quoted, “The bad
artists imitate. The great artists steal.” So arguable, can
we say that AI is just a bad artist? Or is art a uniquely
human endeavor relying on human creativity, agency,
and emotional investment for its creation? And lastly, can
AI-generated art move people in the same way as human-
created art if the emotion and experiential connection
between the artist and audience is severed and rendered
impersonable?
I wanted to explore this idea some more. I created art
to reflect my connection to my mother and my maternal
grandmother, juxtaposing my worldview as a daughter of
an American immigrant with the one that shaped theirs
during the Korean War and reconstruction period that
followed. On the left (below) is my art and on the right,
I used the following prompts in DALL-E: “Using the
following color scheme, black, white and red, create a
drawing of a woman looking back on grandmother’s life
and her connection to her and her mother through the
womb. Juxtapose the Korean war and the women’s current
life in the United States in the 2020s as a daughter of an
immigrant. Exclude the use of any words.”
I went through many iterations using the same prompt.
I hesitated to give explicit instruction on the placement
of the subject because I was interested to see AI’s
interpretation. In a matter of seconds, I had results. I went
through a dozen of different renderings, and although
many were similar, they were distinct enough that I had
many to choose from.
CONTINUE ON PAGE 9
AI-GENERATED ART HUMAN-GENERATED
This diagram, from Sandra Faulkner’s Poetry
as Method, outlines the basic criteria
essential for research poetry.
And how can I apply it in
my research?

ISSUE 01 | FEBRUARY 2025BEYOND GLOBAL HEALTH NEWSLETTER 76
VOICES IN VERSE
Poetry can awaken the senses to the deeper,
underlying meanings of words, painting for
the reader a world in which they have yet
explored to its depth. It allows the reader
to emotionally connect to the author’s
lived experience and worldview, opening
them to new ways of seeing, feeling, and
understanding. As the poet Audre Lorde so
poignantly stated, “Poetry is not only dream
and vision; it is the skeleton architecture
of our lives. It lays the
foundations for a future
of change, a bridge
across our fears of what
has never been before.”
In the social sciences,
poetry is increasingly
recognized as a research
tool and methodology for data collection
and analysis as well as a way to “engage
a political voice” in the pursuit for social
justice. Yet, despite its transformative
potential, poetry and poetic inquiry have
occupied limited space in the pedagogy of
decolonizing traditional research practice.
For marginalized and oppressed populations
such as Indigenous and First Nation People,
poetic inquiry serves as a means to center
their voices and experiences, reframing
research priorities to better align with their
values and belief systems. In doing so,
dominant narratives and methodologies
are challenged, paving the way for more
inclusive and equitable knowledge
production.
Poetry also captivates the reader’s
imagination, encouraging greater empathy
and breaking down barriers of stigmas and
stereotypes across identities of culture, race,
sex, and class. When marginalized voices
are centered, their stories challenge existing
norms, inspiring critical reflection and social
change.
In a paper written by Samantha Cooms and
Vicki Saunders, titled “Poetic Inquiry: A Tool
for Decolonizing Qualitative Research,” the
authors, who self-identify as Indigenous
and come from a long
line of Indigenous poets,
activists, and storytellers,
explore the potential
of poetry in research.
The first author, Cooms,
introduces the paper with
a poem (appropriately
titled “Introduction”) that
that invites the reader to deeply ponder the
themes she hopes to convey. She crafted
this poem not only to highlight the deliberate
exclusion of First Nation knowledge creation
from dominant Eurocentric perspectives but
also to kindle hope for “building bridges”
that transform our collective understanding.
Her poem is presented here (right).

INTRODUCTION
Spaces and places,
Here and there,
the learned ones
draw lines of distinction.
Gatekeepers of knowing,
huddling around corners of science,
As the cracks in between grow.
Arrogant whitewashed picket fences.
Now,
slowly creeping through the cracks
Comes a thick fog,
Like dreaming, covering, uncovering
The re-found,
The re-bound
From here to there
And back again.
Research says,
The new dreamers
Build bridges,
Between words
And worlds
Connecting,
From dreaming places
To knowing spaces
And back again.
How Poetry Empowers Indigenous Perspectives and
Redefines Research
B U I L D
BRIDGES,
BETWEEN
WORDS
“Poetry is not a dream
and vision;
it is the skeleton architecture of
our lives.”
A LANGUAGE THAT KNOWS...
(THE LANGUAGES OF
KNOWING)
- Samantha Cooms,
2023
FROM THE VOICES OF EMERGING FROM THE VOICES OF EMERGING
GLOBAL HEALTH LEADERSGLOBAL HEALTH LEADERS
BUDGET CUTS AND GLOBAL UNCERTAINTY
BY TIARA RANSON, MPH
3
Budget cuts and global uncertainty. First,
funding dynamics play a significant role in
global health research. Second, the reality
is that dismantling entrenched power
dynamics is challenging. Power systems
are deeply rooted in geography, history,
and steeped in deep power dynamics. I
realize that the only way to disentangle
a whole structure is to start with myself.
Self-awareness and connecting my
awareness to the collective. Working slowly
and intentionally. Reflecting on my own
motives. Allowing myself to leverage power
responsibly. Creating spaces that center
equity. And this is especially important
to bridge the gap between conducting
research and the implementation process,
as it relates to applied global public health
practice. For example, because of my
interest in global health systems, particularly
in maternal child health, I traveled to work
with the Medical Research and Programs
Department in Kenyatta National Hospital,
Nairobi, Kenya. I was curious about
how health systems associated with my
research vary from what I experience in the
United States, specifically how research
and implementation can transform health
systems. Through an implementation
science-based practicum, I examined and
assessed the patient journey of mothers
and girls accessing family planning services
within HIV-focused appointments.
Reflecting on colonialism and the power
dynamics of conducting global health
research, I realized how budget cuts and
funding discrimination impacts our research.
Research funding allocations and definitions
of work ethic became clearer to me. I
grappled with the privileges tied to the lens
of “American-fueled” colonialism and how it
amplified and impacted medical research
in Kenya. Institutional financial policies
dictate research budgets and funding,
and my colleagues in Kenya continued to
work, despite being unpaid for two months.
Whereas, in America, workers may strike
and rally as protesting strategies, but in
this instance, my Kenyan colleagues feared
losing their job. This situation highlights
how American financial power impacts
research grants’ and indirect / direct
beneficiary costs to institutions. What do
we do in all this uncertainty? How will
funding cuts and power imbalances impact
researchers in low-income countries? Many
thoughts come to mind. And this is only one
example of the many global power dynamics
that perpetuates colonialism and continues
to contribute to an imbalance between
American and low-income countries.
Global research programs are tied to
American institutions and with all of the
uncertainty—unprecedented questions
remain.
BY LEAH GOLDENBERG
4
As a global health scientist in training, I am deeply interested in the need to bridge
linguistic gaps in medical science and local communities, particularly as we strive to
decolonize global health research and amplify marginalized voices. Biomedical language
profoundly shapes our understanding of the world, and embracing linguistic diversity is
essential for fostering a more equitable future in scientific research. During my summer
research program in Spain, I navigated the dual pathways of scientific inquiry and Spanish
language study. While science unravels the intricacies of the natural world, its global
discourse is predominantly confined to English which excludes the possibilities of science
being expressed and interpreted across multiple language systems.
Linguistic dominance perpetuates inequities, marginalizing non-English-speaking voices
and limiting the inclusivity of research. Immersing myself in Spanish, I have come to
appreciate how language reflects culture, shapes consciousness, and informs worldview.
The absence of multilingual resources in science perpetuates exclusion, particularly
when studying diverse populations. Indigenous research, for example, often overlooks
cultural nuances when conducted without native language insights, leading to skewed
interpretations and possible misrepresentations. This inequity in knowledge distribution
not only deprives researchers of valuable perspectives but also stifles innovation by
restricting the global exchange of ideas. Science thrives on diversity, yet linguistic barriers
constrain its potential. Advocating for linguistic diversity in science offers an opportunity to
dismantle these inequities. By translating resources and cultivating multilingual spaces, we
can create a research landscape that celebrates the richness of global perspectives and
ensures a more inclusive future in the global market.
Research Projects are Steeped Deep in Power
DECOLONIZING SCIENCE
THROUGH LINGUISTIC DIVERSITY
GRACEFULLY
WITHIN WORDS
IN REMEMBERENCE OF
NIKKI GIOVANNI
(1943-2024)
A world-renowned poet and
activist, we honor her legacy with
two short excerpts that showcase
the power she wielded with words,
encapsulating the profound depth
and meaning of her poetry:
Poetry
Cotton Candy on a Rainy Day
poetry is motion graceful
as a fawn
gentle as a teardrop
strong like the eye
finding peace in a crowded room
Don’t look now
I’m fading away
Into the gray of my mornings
Or the blues of every night.
VIEWPOINTVIEWPOINT

FOLLOW ON YOUTUBE
@DRPOETRYSPEAKSHEALTH
FOR MORE HEALTH AND
WELLNESS GUIDANCE

We invite you to explore more
about us and our work at
BeyondGlobalHealth.org

Stay connected! Follow us on
Instagram (@BeyondGlobalHealth)
and LinkedIn for updates and
insights. ISSUE 01 | FEBRUARY 2025BEYOND GLOBAL HEALTH NEWSLETTER
98
Contributors:
1
Dr. Lisa Labita Woodson,
PhD, is the President and
Editor-in-Chief of BGH, a
Fogarty and Fulbright Alum,
and an epidemiology research
associate at the University of
Arizona. She conducts research
in the US and the Peruvian
Amazon with Mamás del Río.
2
Dr. Shameka Poetry Thomas,
PhD, is the Vice President and
Editor of BGH, a Fogarty Alum,
and the Founder and Developer
of the Sickle Cell Women &
Girls (SWAG) Research Lab.
She is also a tenure-track
research faculty member at The
Ohio State University College
of Medicine.
3
Tiara Ranson, MPH, recently
graduated with a Master’s
in Public Health in Global
Health from the University of
Washington-Seattle. She is
currently working as a research
associate with the Tubman
Center for Health and Freedom
and the SWAG Research Lab.
4
Leah Goldenberg is a
graduating senior in Spanish and Bioethics at The Ohio State University College of Medicine, and a research assistant in the SWAG Research Lab.
Acknowledgements:
We would like to acknowledge
Purnima Madhivanan, PhD,
University of Arizona College
of Public Health, as a valued
member of the BGH Team and
Editor.
Citation:
Woodson, L. L., & Thomas, S.
P. (Eds.). (2025, January 31).
BGH Newsletter, 4(1). Beyond
Global Health. https://www.
beyondglobalhealth.org/bgh-
newsletter-2025

Contact us:
BeyondGlobalHealth@
gmail.com
CREATING AI ART
However, most of the art lacked
a clear focal point with images
arranged in collage form, making
the art feel unbalanced and
excessive. Admittedly, some of
the pictures were close to what
I had hoped to accomplish, but
upon careful scrutiny, certain
elements didn’t feel right. For
example, in one AI-generated
picture, the fetus is poorly drawn
and lacks any distinguishable
human features; and in another,
the uterus is not anatomically
correct. For human-made
art, these elements could be
purposely placed as a means
to engage the audience or
to evoke dialogue around its
interpretation. I venture to guess
that this was not the intention of
AI, but more so an issue related
to the lack of training data.
Furthermore, generative AI has
difficulty with complex images
such as people’s hands which
are often depicted with more
or less than five fingers, digits
all the same length, or without
a deposable thumb. Yet, that
doesn’t preclude using AI as a
tool. Artists can find inspiration
anywhere, including AI. It also
can serve as a reference in the
creative process, helping the
artist improve their accuracy,
understanding, and creativity—
using what is available and seen
to interpret and adapt.
AI serves many functions and
can be a valuable tool for
expanding our ideas, drawing
from the vast resources available
on the internet. But can it truly
capture the human spirit or
provide the joy found in the act
of creating when it generates
image after image in mere
seconds? Does this process lack
the deeper fulfillment of creation,
and can it still prompt us to
deeply explore our existence and
worldviews?
These are questions I leave for
you to ponder.
• Cloud A, Faulkner SL. Poetic inquiry as social justice
and political response. Vernon Press; 2019.
• Cooms S, Saunders V. Poetic inquiry: a tool for
decolonising qualitative research. Qualitative Research
Journal. 2024/01/29/ 2024;24(1):3-22. doi:https://doi.
org/10.1108/QRJ-05-2023-0071
• Faulkner SL. Poetry as method: Reporting research
through verse. Routledge; 2016.
• Popova M. Audre Lorde on Poetry as an Instrument
of Change and Feeling as an Antidote to Fearing. The
Marginalian. Maria Popova; 2020. November 26, 2024.
https://www.themarginalian.org/2020/10/18/poetry-
is-not-a-luxury-audre-lorde/
• Prendergast M. “Poem is what?” Poetic inquiry in
qualitative social science research. International
Review of Qualitative Research. 2009;1(4):541-568
• Simonds, V. W., & Christopher, S. (2013). Adapting
Western research methods to indigenous ways of
knowing. Am J Public Health, 103(12), 2185-2192.
https://doi.org/10.2105/ajph.2012.301157
REFERENCES &
RESOURCES
IGNITING A PROFOUND SHIFT
IN HOW GLOBAL HEALTH
IS ADDRESSED AND PERCIEVED
BY FOSTERING A DEEPER AND MORE EMPATHIC UNDERSTANDING
SHAMEKA POETRY THOMAS
filming an African Dance
Meditation session with
Ghanaian Drummers in West
Africa
LISA LABITA WOODSON
conducting interviews in
the Peruvian Amazon with
community health workers.
Our articles draw inspiration from a variety
of resources. Below are references for further
reading and exploration:
WELLNESS STRATEGIES
as a Poetic Call to Action for
Global Health Researchers
Dr. Poetry’s strategies as of lately:

A WELLNESS MESSAGEA WELLNESS MESSAGE
FROM THE EDITORFROM THE EDITOR
1. Deep breaths at my laptop,
before flights, before
meetings, and before leaving
my house
2. Listening to ancestral drum
music and indigenous sound
bowl meditations
3. Joining an African Dance
class, virtually or in-person
4. Practicing online Kemetic
Egyptian Yoga and Yin Yoga
5. Spicing up my workouts
with Afro Beats, Amapiano,
Reggaetone, or Reggae Music
6. Practicing new line dances
(e.g., Tamia’s Song called “I
Can’t Get Enough of You” is
my favorite)
7. Watering my plants and
buying flowers to put in my
home
8. Charging my Rose Quartz
crystals
9. Making space for the creative
process
What are some of your wellness
strategies?
Now more than ever, mental health
awareness is critical for researchers and
scholars in the pursuit of global heath
research.
Travel dynamics have sparked global
anxieties and uncertainties around the
world. Sustaining global partnerships now
require new approaches. One approach
that must be prioritized in our lives is:
wellness and well-being. For global health
researchers, it is important for us to honor
our mental health and well-being during
these times ahead. Being creative in
our approach on wellness can be a new
and refreshing experience. For example,
different seasons require methods. What
worked last year, may not work this year.
Allowing ourselves to step outside of the
box and redefine balance.
For me, my approach to wellness is more
inclusive of the mind, body, and soulful
experience—a poetic call to action. Indeed,
unplugging and rest are powerful examples.
As a global health scientist, however, I
am always leaning into new ways to spice
up my definition. Thus, in addition to
unplugging from social media and taking
nature walks, I focus on adding
BY SHAMEKA POETRY THOMAS, PhD
2
other elements to my wellness palate,
such as dancing, yoga, pilates, and
African dance fitness excercises. There
are so many ways to blend the unique
ancestral cultures of dance and fitness
to the balance of working in research.
There are days, for instance, when I
am so drained and exhausted from the
heaviness of how social politics and
climate change impact. Days when my
mind is overwhelmed in the lab. Days
when my mind is stressed with collective
grief for our planet. Days when my mind
is struggling to breathe. On these types
of days, my new approach has been to
get out of my mind. Getting out of mind,
allows me to get into my body. Practicing
embodiment through dance and yoga,
has been an instrumental way to bring
inner peace to my research process.
During these unprecedented times,
these creative approaches to wellness
have kept my joy alive. So, yes while
occasionally unplugging, setting
boundaries, and taking naps are
critical—I remind myself to still add
hints of flavor to re-inspire my mental
health journey. Indeed, the global world
is in chaotic and full of uncertainty. The
global world, however, is also full of
possibilities. There are so many ways
my African ancestry can be honored
simply by infusing their methods into
my wellness goals. Not only does it give
me inner peace and balance, but also
it allows me to remember the legacy of
strength in their abilities to workaround
adversity.
May we all be challenged to breathe
deeper and redefine what works.
Because possessing creative energy
is the key ingredient for true inner
sustainability. May we continue to be
hopeful and bold toward fulfilling life in
global health research, no matter the
circumstances ahead. Life is uncertain.
May we be collectively creative in *the*
uncertainty.
Disclaimer: The authors’ in this newsletter speak on behalf of their own viewspoints.
None of these contributions represent the contributor’s affilitated research institutions.
©Beyond Global Health

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