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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

By Katherine Drabiak-Syed

Abstract

... Markow expressed to Martin that she was also interested in studying the genetic underpinnings of schizophrenia among the tribe, but Martin informed her that the tribe would not be interested in participating in that area of study,maintaining that diabetes was to be the primary focus of the research. ... Tilousi shared her discovery with the tribe, and at a special Tribal Council meeting, the council issued a Banishment Order stating: "the Havasupai Tribe has demanded that ASU disclose to the Tribe all of its actions regarding Havasupai blood and stop all unauthorized experimentation on Havasupai blood, but ASU has failed to disclose to the Tribe any information about where ASU distributed the blood and the purposes for all research." ... While the IRB was likely unaware that Markow's research team had been collecting blood for an entire summer prior to any IRB approval and that the subjects provided consent because they believed the ASU team was solely conducting diabetes research, the Hart Report also found several inconsistencies between the research proposal and the actual data collection. ... To assess the risk of these first three harms and understand their significance prior to initiating any new research projects, researchers and institutions must examine the significance of biological materials and the implication that their misuse would have both to the individual subject and the entire tribe, including as the case was here, the misuse of the blood samples. ... Maintaining current legal policy vis-a-vis ownership of biologic materials will likely continue to result in spiritual harm to Native American individuals and tribes

Topics: Bioethics, studies, Genetics and Race
Year: 2010
OAI identifier: oai:health-equity.pitt.edu:2446
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