Journal Article

Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research

Garrison, Nanibaa' A.

2013

Overview

In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University (ASU) researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board (IRB) chairs and human genetics researchers at US research institutions revealed their perspectives on the Havasupai lawsuit. For interviewees, the suit drew attention to indigenous concerns over genetic studies and increased their awareness of indigenous views. However, interviewees perceived no direct impact from the Havasupai case on their work; if they did, it was the perceived need to safeguard themselves by obtaining broad consent or shying away from research with indigenous communities altogether, raising important questions of justice for indigenous and minority participants. If researchers and IRBs do not change their practices in light of this case, these populations will likely continue to be excluded from a majority of research studies and left with less access to resources and potential benefit from genetic research participation.

• Publisher: Sage Publications,SAGE Publications,SAGE PUBLICATIONS, INC
• Subject: American Indians / Arizona / Arizona State University / Benefits / Compensation / Consciousness / Consent forms / Cultures and civilizations / Deoxyribonucleic acid / Diabetes / DNA / Ethics / Ethnic groups. Acculturation. Cultural identity / Genetic research / Genetics / Genomics / Human genetics / Indigenous peoples / Indigenous Populations / Inequality / Informed consent / Institutional review boards / Interviews / Justice / Litigation / Medical genetics / Medical research / Minorities / Native peoples / Otherness / Participation / Population / Research centers / Research ethics / Research institutions / Research studies / Researchers / Review boards / Settlements & damages / Sociology / Sociology of knowledge and ethics / Sociology of knowledge and sociology of culture / Sociology of science / Type 2 diabetes mellitus / U.S.A / United States / United States of America / Universities