Exploring the Ethics of Genetic Editing in Humans (www.kiu.ac.ug)

The development of CRISPR-Cas9 and related gene-editing technologies has revolutionized biomedical
science, offering unprecedented possibilities for treating and even eliminating genetic diseases. While
somatic cell editing presents a relatively well-supported application for therapeutic purposes, germline
editing where changes are heritable raises profound ethical, legal, and societal concerns. This paper
explores the ethical dimensions of genetic editing in humans, contextualizing its historical development,
technological evolution, and ethical frameworks. It examines the potential benefits and risks of genetic
manipulation, public perceptions, regulatory landscapes, and major controversies, including the first
gene-edited babies in China. Through a synthesis of case studies and scholarly discourse, the paper calls
for a global, interdisciplinary approach to governance that balances innovation with human dignity,
safety, and equity. A moratorium on heritable human genome editing is proposed until universally
accepted ethical and legal guidelines are established.

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Exploring the Ethics of Genetic Editing in Humans

Chelimo Faith Rebecca
Department of Clinical Medicine and Dentistry Kampala International University Uganda
Email: [email protected]
ABSTRACT
The development of CRISPR-Cas9 and related gene-editing technologies has revolutionized biomedical
science, offering unprecedented possibilities for treating and even eliminating genetic diseases. While
somatic cell editing presents a relatively well-supported application for therapeutic purposes, germline
editing where changes are heritable raises profound ethical, legal, and societal concerns. This paper
explores the ethical dimensions of genetic editing in humans, contextualizing its historical development,
technological evolution, and ethical frameworks. It examines the potential benefits and risks of genetic
manipulation, public perceptions, regulatory landscapes, and major controversies, including the first
gene-edited babies in China. Through a synthesis of case studies and scholarly discourse, the paper calls
for a global, interdisciplinary approach to governance that balances innovation with human dignity,
safety, and equity. A moratorium on heritable human genome editing is proposed until universally
accepted ethical and legal guidelines are established.
Keywords: CRISPR-Cas9, gene editing, human germline modification, bioethics, somatic cell therapy,
genetic enhancement, regulatory frameworks, personhood.
INTRODUCTION
CRISPR-cas9 is a pivotal 21st-century discovery, offering a straightforward and cost-effective method for
genome editing. However, its rise has sparked intense ethical debates surrounding human genome
modification. Historically, the applications of CRISPR-cas9 in research, agriculture, and therapies are
well-documented; however, ethical considerations, especially regarding human genetic alterations, have
gained less attention. Two significant events the modified babies incident and the creation of gene-edited
human embryo banks in China ignited global discussions and brief anti-gene-editing campaigns. This
article aims to elucidate the background of human genome editing and its ethical ramifications, enhancing
understanding of current debates. Life and health are essential for human progress, yet genetic diseases
over 500 monogenetic types and countless multi-genetic variants pose significant challenges, affecting
individuals and families profoundly. Genetic disorders can arise from de novo mutations during
fertilization or from inherited traits. Currently, couples often undergo screenings for high-incidence birth
defects and invasive testing for fetal genetic mutations during pregnancy, while prenatal diagnostics may
lead to termination before 14 weeks. This “waiting and seeing” approach often induces anxiety and regret
in expecting parents. Thus, embryonic gene editing, before embryo transfer, holds promise in mitigating
diseases linked to parental genetic variations [1, 2].
Historical Context of Genetic Editing
Prior to CRISPR/Cas9, a few gene therapy techniques had been attempted and discussed in both
scientific and bioethics literature. Most were variants of viral vector approaches. Contextually, gene
therapy, and even more so the development of germline genome editing, has historically been connected
to therapeutic concerns – specifically the prospect of treatment for genetic and genetic risk variants
conferring rare diseases. In fact, β-thalassemia caused by a mutation of the HBB gene was the ex vivo
target of the first CRISPR experiment on human embryos, published in late 2013. Beta-thalassemia was
also the condition that prompted the well-publicized gene editing experiment on human embryos in China
in 2017, which led to controversy, condemnation, and scientific outcry, as well as much speculation into
the circumstances of the research itself. Prior to this most recent string of genetic editing, concurrent
EURASIAN EXPERIMENT JOURNAL OF MEDICINE AND MEDICAL SCIENCES
(EEJMMS) ISSN: 2992-4103
©EEJMMS Publications Volume 6 Issue 2 2025

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with outcry surrounding the Chinese embryo work, discussions around gene therapy more generally and
germline genome editing in particular flourished in the bioethics literature. Bioethicists and scholars
deployed the term “enhancement” in the context of both foreseeing and condemning germline gene
editing research on, or transfer to, human subjects. Some discussions keyed in on the way that this
enhancement work would not only have an ethical and legal public health aspect, but would also be
sociologically vexing, determining who would be the agents to decide on the research itself, and
ultimately the transfers, on behalf of their progeny; bioethics commentators fluctuated between
despairing that parents would choose to enhance their offspring’s cognitive abilities, and confident that
longstanding moral, ethical, and societal discussions would preclude, if not fully halt, the advancements
[3, 4].
Types of Genetic Editing Technologies
Genetic editing encompasses recombinant DNA technology and the various alterations of the genetic
material that are possible due to the technology. Although there have been many recombinant DNA
technologies, some novel ones such as CRISPR-Cas9-based gene editing technology are generating much
more interest than the others, including those well-established ones like zinc-finger nucleases technology
and transcription activator-like effector nucleases. There are two different medications achieved through
genetic editing technology. The first application is somatic cells in human tissues which do not pass on
the information to future generations. The second application is germline cells comprising the
reproductive cells that produce the sperm and egg. Editing of the germline can mean heritable editing,
where the change is passed on to the offspring. The germline editing is of interest because, being
heritable, it passes on the change to every cell in the individual and to every descendant of that individual.
Thus, the ethical stakes of germline editing for humans are considerably higher than those of somatic
editing. Germ-line editing of humans raises some of the technical concerns raised in somatic editing, but
this is a more complex undertaking and raises other totally new concerns. A recent exciting advance in
genetic editing technology has been made. Variety of designs of the CRISPR system exist among the
species within the Archaea domain. Two proteins created using this technology are RNA-guided DNA
endonuclease enzymes that, given a proper RNA guide, determine where in the genome to cleave the
DNA to edit and repair it. The CRISPR-Cas9 editing system relies on this class of proteins and RNA, an
RNA-guided DNA endonuclease called Cas9. Attempted new medications consist of CRISPR
components, guiding RNA and Cas9 protein, delivered with viral vectors into host human cells. This
same technique requires an RNA guide that results in inappropriate cuts in places other than those
targeted, with only a few amino acid differences between a targeted site and such off-target sites. Thus
far, most CRISPR attempts at human genetic editing have used non-viable human embryos [5, 6].
Ethical Frameworks in Genetic Editing
Throughout history, biotechnological advancements have imposed ethical challenges to responsibly
regulate the new and emerging ethical dilemmas. The ethical consideration surrounding gene-editing
technology, CRISPR-Cas9, garnered bioethical discussions in the past decade. In light of this, the ethical
consideration of genome editing is highlighted as a foundation to regulate its future use, biotechnological
advancements, and emerging ethical dilemmas. As the panorama of biotechnology advances, some terms
regarding the future of humanity, personhood, and the definition of germline genetic inheritance are
discussed. Codifying, prohibiting, and tempering were posed as possible frameworks when deliberating on
the ethical implications. Codifying framed the ultimatum regarding moral acceptance and social consent.
As possibilities are comprehended, the consequentiality of the use of improper use results in unnecessary,
grave, and irrevocable ethical implications. Prohibitions stem from preexisting rules to control
humankind’s most heinous intentions. Ones like the Geneva Conventions faced criticism due to actors
flouting such agreements. Similar apprehensions are presented with tempering, a balance of cautioning
the bioethical nuances of gene editing with pathways for support. After establishing the grotesque
ramifications arising from outlying the ethical implications as permissible, bioethical concepts
appropriated to the deliberation of technology use must be evaluated. Some frameworks such as that of
personhood, rights, and dignity question the ramifications on persons – as in sentient beings with a sense
of self, entity quintessentially worthy of rights, and having moral status, and then deformations of said
beings resulting in unjust harm. Similarly, a framework suggested for germinal selections focuses on the
cascading ramifications that would cause every beneficial germline alteration to enlist a new kind of
human [7, 8].

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Potential Benefits of Genetic Editing
The past decade has raised suspicions about reckless genome editing, especially after the secretive first
successful germline editing of a human embryo. Investigations followed concerning the licensing of
reproductive gene editing. However, the biopolitical risks are not confined to human germline editing;
they extend to somatic gene editing in humans and germline editing in nonhuman organisms. Alarm bells
have been sounded in recent years, yet no steps have been taken toward responsible governance of the
technique. While there is a push for progress that may benefit humanity, the ethical complexities
surrounding somatic gene editing complicate the discourse. Social unease regarding genome editing is
relatively new, driven by scandals and broader biotechnology concerns. Preferences for specific editing
forms hinge on their characterization as “natural” or “artificial,” with the former being more accepted. The
emergence of complex life forms has rendered traditional views of embrace versus control inadequate. As
cultural narratives evolve, they reflect new ethical considerations in scientific governance, influenced by
rapid developments in life sciences [9, 10].
Risks and Concerns
Gene editing scientists advocate for careful discussions about heritable human gene editing due to
concerns regarding genetic pleiotropy at disease mutation sites. Rather than effectively treating diseases,
gene editing may unintentionally introduce recessively lethal mutations, elevate risks for other diseases,
and contribute to premature aging. Human diseases should be managed with medicinal alternatives rather
than gene editing, which should be approached with caution. Pre-existing conditions need comprehensive
study, and patients should be treated urgently. While not everyone can afford treatment, the governance
of drug and gene editing is crucial for ensuring safety and equity. Gene editing should be a last resort,
with scientists held accountable for potential outcomes similar to those of complex surgeries. The risks of
unintended off-target mutations pose significant safety concerns, potentially exacerbating existing
diseases or creating new ones, causing genetic inactivation and transcriptomic alterations. The
implications on human genomes link to various diseases, revealing the complexity of gene editing,
including unintended structural variations and epigenetic changes that may disrupt development.
Understanding side effects of gene editing platforms is vital prior to clinical application. Insufficient
screening may overlook side effects, complicating genome coding. Off-target effects result from stress
mechanisms and genomic shifts, affecting tissue phenotypes and signaling interactions. Thus, designed
screening is essential to identify epigenetic impacts and understand the frequency and nature of gene
editing implementations [11, 12].
Regulatory Landscape
The regulation of gene editing technologies involves important ethical and policy issues that go beyond
pure risk assessment and safety perspectives, for example environmental and clinical risk assessments,
protection of public health and food safety, and control over commercialization of biotechnology. The
regulation of gene editing technologies and products involves spatial dimensions that are tied to the
nature of the technologies and practices involved, and calls for broader considerations about
inclusiveness, outreach and legitimacy of governance . The regulation of gene editing thus raises
important issues of public engagement, alternative forms of legal governance beyond public regulation,
the status of organisms and the role of non-human actors. The promise is great, but so are the ethical and
policy concerns. Society should ask: How can gene editing be governed responsively? How can
regulations take the worries of society seriously? Gene editing technologies and products pose science-
based ethical and policy issues. A distinction has been made between legitimate concerns about safety and
other, wrongfully designated, non-scientific concerns based on ethics and philosophy. Regulation of gene
editing in humans is hugely pertinent, as there are serious political, ethical and social concerns around its
use. In November 2018 a Chinese biophysicist announced he had altered two twin girls, possibly the
world’s first genetically engineered humans, to protect them from HIV and other infections. The
proceedings foremost chlorinated regulators and necessitated to answer the ethical and legal questions
arising, whether this is something that ought to be allowed and if so, how to regulate it. In the aftermath
of this event, countries around the world including China tightened legislation around this procedure and
forked regulations that range for capital punishment in China to ordinary biotechnology issues in 2Africa.
There have been speculations about a global study of this technology via the combined resources and
knowledge of the key countries and subsequently, international agreements or at worst bio-chemical
conventions restricting or banning such tests, treatments and improvements [13, 14].

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Public Perception of Genetic Editing
The public perception of genetic editing and its moral implications are still not well understood. Recent
focus groups in the U.S. examined attitudes toward gene editing, particularly in food production.
However, human applications have drawn significant public interest and concern. The use of CRISPR
technology to modify human embryos in China led to global outrage, with accusations of genetic racism
and ethical breaches coming from scientists, governments, and major organizations. This incident
prompted the journal Nature to stop publishing content on human germline editing and led to statements
from Chinese authorities acknowledging the misuse of gene editing. The Chinese government announced
regulations while the scientific community called for clearer ethical frameworks. A letter in Nature,
signed by 130 researchers, condemned the embryo modifications and advocated for a moratorium on
germline editing until proper safeguards are established. Conversely, a panel led by Nobel laureate
Charles M. Rice supported the continuation of basic research, igniting further debate within the scientific
community [15, 16].
Case Studies
This study examines the legal and ethical implications of human genetic and germline editing
technologies. These advancements could potentially lead to cures for severe diseases, yet debates
regarding their moral implications remain limited. Central to the controversy is whether an embryo
possesses full moral standing similar to humans or is merely disposable. Establishing the legal status of
personhood and embryo rights is essential to address germline genome editing (GGE) concerns. This
topic demands careful regulation due to its profound impact on humanity's future. An examination of
prior discussions and academic literature indicates a consensus favoring somatic gene editing, provided it
undergoes rigorous ethical and legal scrutiny, including safety tests and transparency. However, the
majority of countries and organizations oppose germline genetic editing technologies. A deeper
understanding of ethical and moral implications must precede any regulation. Recent literature has
primarily focused on the ethical concerns of GGE or the legal status of embryos, yet few have examined
them together, despite their intrinsic connection. The critical turning point may involve creating hybrid
embryos with human cells or working with hybrid embryos containing human stem cells [17, 18].
Future Directions in Genetic Editing
As more dramatic human application for CRISPR–Cas9 gene editing are proposed, such as the in utero
editing of genes for hypermuscularity or intelligence, bioethicists continue to argue over the morality of
germline gene editing. Was the conclusion of the Committee on Human Gene Editing a triumph of
ethics? Everyone agrees the technology must be used humanely, but what does that mean? Subjecting
every proposed human gene editing experiment to an unfathomably broad and vague test of its necessity
or proportionality? Unleashing a fierce debate over the scope and definition of the permissible that will
stagnate its application outside extremely rare inherited disease cases? In this symposium, 10 bioethicists
examine the key issues about gene editing's ethical concerns and future directions. Consider a more
modest notion: let the conversation on germline genome editing unfold publically, honestly, and in the
open. Unlike other bioethics topics, CRISPR in the germline has a fresh set of moral dilemmas.
Bioethicists have deep roots in the human genome project and decades of bioethics principle development
in animal biotechnology, yet it is as if this all existed in another world when CRISPR entered the human
domain. Societal views of biotechnology are abstract and dated hymns to the wonder of the genome. One
side dares not say what it does want and the other dares not say exactly what it is afraid of. There is little
dangerous or absurd about a GGE experiment that does not edit an embryonic tumor suppressor or
designer embryo plucked from preimplantation genetic sequencing or laughed at crude efforts to edit an
embryo for athletic ability. The societal blind spots exposed by DRD4, a 7-repeat polymorphism of the
dopamine receptor implicated in novelty seeking and risk taking, need examination. Eventually there
should be recognition that Jerry- and Jaime-sized standard-state babies will one day be common in many
societies, alongside naturally born specimens of indeterminate origin; and this possibility might be
considered tolerable by geneticists, sociobiologists, and ethologists, just as natural blindness and deafness
are tolerated today [19, 20].
CONCLUSION
Human genetic editing represents both a groundbreaking scientific advance and a critical ethical frontier.
While the therapeutic potential of somatic editing in treating genetic diseases is promising, germline
modifications introduce complex and far-reaching implications. These include the risks of unintended
mutations, intergenerational consequences, societal inequities, and philosophical debates about

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personhood and human identity. Public reaction, coupled with controversial incidents, has highlighted the
need for strict oversight and global consensus. Ethical frameworks such as personhood, dignity, and
justice must guide policymaking in this evolving field. Regulatory systems should be inclusive,
transparent, and adaptable, ensuring that progress in biotechnology aligns with fundamental human
values. Until globally harmonized ethical standards are developed, a cautious and moratorium-based
approach to heritable human genome editing is warranted to prevent irreversible harms and uphold the
integrity of scientific practice.
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CITE AS: Chelimo Faith Rebecca (2025). Exploring the Ethics of
Genetic Editing in Humans. EURASIAN EXPERIMENT JOURNAL
OF MEDICINE AND MEDICAL SCIENCES, 6(2):34-39