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6 J. Health & Biomedical L. 175 (2010)
Lessons from Havasupai Tribe v. Arizona State University Board of Regents: Recognizing Group, Cultural, and Dignity Harms as Legitimate Risks Warranting Integration into Research Practice

handle is hein.journals/jhbio6 and id is 183 raw text is: 175 Journal ofHealth & Biomedical Law, VI (2010): 175-225 C 2010 Journal offHealth & Biomedical Law Suffolk University Law School Lessons from Havasupai Tribe v. Arizona State University Board of Regents: Recognizing Group, Cultural, and Dignitary Harms as Legitimate Risks Warranting Integration into Research Practice Katherine Drabiak-Syed* In March 2010, members of the Havasupai tribe and Arizona State University Board of Regents (ASU) entered into a settlement agreement, signaling the end of a lengthy legal battle over the research use of blood samples. Approximately twenty years ago, researchers at ASU began collecting blood from members of the tribe to conduct what the tribe thought would be diabetes research projects. Years later, however, the tribe discovered that a researcher at ASU shared their blood with other researchers and conducted research on schizophrenia, inbreeding, and human population migration theories. Upon discovering how researchers at ASU had been using their blood, tribe members asserted that consent to such research would not have been acquired had they been adequately informed, and they demanded that ASU withdraw them from the study and return their blood samples. When ASU refused, members of the tribe filed two separate lawsuits against the University, alleging that ASU's actions resulted in cultural, dignitary, and group harm to the participants. The progression of events during the course of research and subsequent litigation demonstrates how the current legal and ethical framework governing the collection of biological materials for research fails to account for assessments of risk and harm that are specific and unique to identifiable population groups and Native American tribes. For these specific populations, blood * Katherine Drabiak-Syed, JD. Visiting Assistant Research Professor and Faculty Investigator Indiana University Center for Bioethics, 410 West 10h Street, Indianapolis, Indiana, 46202. Phone: (317) 278-4041. Email: kdrabiak@iupui.edu. Acknowledgments: Drabiak-Syed is a Visiting Assistant Research Professor and Faculty Investigator at the Indiana University Center for Bioethics. This publication was supported by a grant from the Richard M. Fairbanks Foundation to the IU Center for Bioethics, and by NIH/NCRR Grant Number RR025761. Its contents are solely the responsibility of the author and do not necessarily represent the official views of the NIH.

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