Slides: Havasupai People vs Arizona State University

In 1989, the Havasupai Tribe asked an anthropologist at Arizona State University for help in figuring out whether genetics might be contributing to its high rate of diabetes mellitus. The anthropologist recruited a geneticist (who was also interested in schizophrenia) to lead the study.



The rest of the story is disputed. Was only diabetes research mentioned when members of the tribe allowed ASU investigators to collect blood samples or did the Havasupai understand that other questions could be studied when they provided consent for research on “the causes of behavioral/medical disorders”? The researchers determined that the genetic link to diabetes found in another tribe did not exist among the Havasupai, but other ASU researchers who used the samples published papers about alcoholism, mental illness and the tribe’s migration from Asia (thus contradicting the tribe’s core beliefs about its origins).



After seven years of litigation, the suit brought by the tribe in 2003 was finally settled with ASU apologizing, paying $700,000 to 41 of the Havasupai, returning the blood specimens to the tribe, and agreeing to prevent any further research based on information derived from the materials.



This forum will explore such issues as:

What was the meaning of the consent that the Havasupai provided?
What should subjects be told about future research with anonymized samples? What can we tell them?
What are the interests of the tribe (distinct from its members’ interests) and how can and should they be protected?
What are the implications of the ASU-Havasupai case for physician-investigators conducting community-based research in a diverse urban setting like Los Angeles?

1. !
!Donna!Spruijt-Metz,!PhD!MFA!
!
!Director,)USC)mHealth)Collaboratory)
Center)for)Economic)and)Social)Research)
Associate)Professor)Preven=ve)Medicine)and)Psychology)
Director,)Responsible)Conduct)in)Research,)USC)Keck)School)of)Medicine)
[email protected])
USC!CTSI!Ethics!Forum!
September!10!2014!
The$Havasupai$Tribe$versus$$
Arizona$State$University$
Gene7cs,$Consent,$and$Communi7es$!

2. The$Havasupai$people$(people$of$the$blue@
green$waters)$have$lived$in$the$Grand$Canyon$
for$at$least$the$past$800$years$

3. • ~!650!people!
• In!1989,!members!!approached!ASU!to!learn!why!the!incidence!of!!
diabetes!within!their!community!was!increasing.!!
• Therese!Markow,!a!genePcist!at!ASU,!took!on!the!study.!!
• ~!100!tribal!members!signed!a!broad!consent!document!to!“study!
the!causes!of!behavioral/medical!disorders”!!
• Most!of!them!had!not!completed!high!school,!and,!for!many,!
English!was!a!second!language!!
• All!believed!that!they!were!donaPng!blood!solely!for!the!purpose!of!
looking!for!a!link!to!diabetes!to!improve!the!health!in!their!
community!!
• The!genePc!link!to!diabetes!ASU!was!looking!for!was!not!found!!
• Research!conPnued!into!medical!disorders!without!seeking!!
addiPonal!consent!
• Other!ASU!researchers!also!uPlized!the!Havasupai!samples!for!their!
work!and!published!papers!about!inbreeding,!alcoholism,!and!the!!
origin!and!migraPon!of!the!tribe!from!Asia.!!

4. Havasupai$Indian$Tribe$Journey$
• hXp://www.nyPmes.com/video/2010/04/21/
us/1247467672743/blood-journey.html!!

5. What!does!this!teach!us?!
• What!was!the!meaning!of!the!consent!that!the!Havasupai!provided?!
• What’s!the!harm—when!genePc!data!are!derived!from!samples!that!
have!been!voluntarily!provided!to!researchers!for!another!purpose?!
• What!are!the!interests!of!the!tribe!(disPnct!from!its!members’!
interests)!!
– how!can!we!solicit!feedback!so!that!we!can!know!them?!
– how!can!and!should!they!be!protected?!
• What!kinds!of!harms!tend!to!be!under-emphasized!in!our!current!IRB!
review?!
• What!should!subjects!be!told!about!future!research!with!anonymized!
samples?!
• What!are!the!implicaPons!of!the!ASU-Havasupai!case!for!scienPsts!
conducPng!community-based!research!in!a!diverse!urban!secng!like!
Los!Angeles?!

6. hXp://www.naPveresearchnetwork.org/
links.htm!

7. hXp://ncaiprc.org/!