slides: havasupai people vs arizona state university
Post on 18-Dec-2014
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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 dmetz@usc.edu
USC CTSI Ethics Forum September 10 2014
The Havasupai Tribe versus Arizona State University
Gene7cs, Consent, and Communi7es
The Havasupai people (people of the blue-‐green waters) have lived in the Grand Canyon
for at least the past 800 years
• ~ 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.
Havasupai Indian Tribe Journey
• hXp://www.nyPmes.com/video/2010/04/21/us/1247467672743/blood-‐journey.html
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?
hXp://www.naPveresearchnetwork.org/links.htm
hXp://ncaiprc.org/
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