Garrison Nanibaa' A
Center for Integration of Research on Genetics & Ethics, Stanford Center for Biomedical Ethics, Stanford, CA, USA.
Sci Technol Human Values. 2013;38(2):201-223. doi: 10.1177/0162243912470009. Epub 2012 Dec 21.
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.
2004年，哈瓦苏派部落对亚利桑那州董事会和亚利桑那州立大学（ASU）的研究人员提起诉讼，原因是他们发现最初为2型糖尿病基因研究收集的DNA样本被用于其他多项基因研究。该诉讼于2010年4月达成和解，其中包括金钱赔偿以及将DNA样本归还给哈瓦苏派部落，但这并未为研究人员留下法律先例。通过半结构化访谈，美国研究机构的机构审查委员会（IRB）主席和人类遗传学研究人员透露了他们对哈瓦苏派诉讼的看法。对于受访者而言，该诉讼引起了人们对原住民对基因研究担忧的关注，并提高了他们对原住民观点的认识。然而，受访者认为哈瓦苏派案对他们的工作没有直接影响；如果有影响的话，那就是他们认为需要通过获得广泛同意来保护自己，或者完全回避与原住民社区的研究，这就引发了关于原住民和少数族裔参与者正义的重要问题。如果研究人员和IRB不根据此案改变他们的做法，这些人群可能会继续被排除在大多数研究之外，并且获得资源的机会减少，参与基因研究的潜在益处也会减少。
