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Havasupai Genetic Research Case Settled

After seven years of legal arguments, Arizona State University reached a settlement agreement with the Havasupai Indian tribe last year. The University paid $700,000 to 41 tribe members, returned blood samples it had been collecting since 1990, and agreed to provide other services to the tribe such as scholarships and assistance in funding a new health clinic. Perhaps most important, however, is the heightened awareness this case has brought to issues surrounding informed consent, vulnerable populations, and medical and scientific research.

In 1990, the Havasupai agreed to let two medical researchers take blood samples for what they believed was a diabetes study. The researchers came regularly, took samples, but also gave talks on diet, exercise, and nutrition. The researchers were hoping to find a genetic variant similar to what they had found in the Pima Indians and their high rate of diabetes. Such a link might help identify risk factors. About 100 tribe members gave blood from 1990-1994, each one signing a consent form that said among other things that the research would “study the causes of behavioral/medical disorders.”

No link was found for diabetes, but the researchers used the samples to study possible connections to schizophrenia, metabolic disorders, and alcoholism. Papers were published over the next ten years on a variety of topics, and in the meantime, the nutrition classes ended (because the grant funding had ended). No one told the Havasupai what they had learned or not learned from the research; all the while, diabetes rates continued to be problematic.

When a member of the tribe who was also an ASU student learned of some of this research, she was shocked. She asked if any of the authors of these papers had sought permission from the tribe to use the samples? In addition, members of the tribe were angry and hurt to discover that some of the papers called into question the Havasupai’s cultural beliefs about their origins while other papers inferred inbreeding. These findings contradicted deeply held beliefs of the tribe and increased fears that their land could be taken from them.

Informed consent is meant to protect research subjects from physical harm. But the new era of genome discovery and DNA mining brings informed consent into a less clear arena. Researchers will admit that they don’t always know what they’re looking for; some major scientific discoveries and breakthroughs are happy accidents, events found while looking for something else. Should there be explicit consent for all research done with blood and tissue samples? What if the samples are anonymous and cannot be linked to individuals?

Medical research cannot ignore the possibility of misunderstanding between donors and researchers. As this case demonstrated, people may give consent for a specific problem or research topic and yet be signing a form that a researcher believes conveys a much broader permission for a wider field of investigation. How do we meet each group’s expectations? What is the ethical way to conduct research with DNA samples?

— Deirdre Neilen

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Bioethics in Brief is a newsletter of the Center for Bioethics and Humanities, committed to promoting clinical health care and health policy which is patient-centered, compassionate, and just. Opinions expressed in the newsletter are those of the authors and do not represent the position of the Center.

Bioethics in Brief