Academic journal article Cross / Cultures

Tribal Communities and Genetic Research: Concerns and Expectations

Academic journal article Cross / Cultures

Tribal Communities and Genetic Research: Concerns and Expectations

Article excerpt

LET US IMAGINE THIS: YOU HAVE DONATED A SAMPLE OF YOUR BLOOD to study the genetics of diabetes. The disease is common among your relatives and in your community, and you want to help the research. You feel it is your duty to find out the reasons and to develop a cure that everyone, including yourself, could benefit from. Then, later on, you learn that your DNA has been used for other studies - schizophrenia, human migration, inbreeding! Unbeknownst to you, scientists have been drawing conclusions about your community and your ancestors.

This in fact did happen to the Havasupa'i, a small tribe that live at the bottom of the Grand Canyon. They are difficult to reach; in fact, they are accessible mainly by mule or horseback or by helicopter. Because they have been isolated for so long, the Havasupa'i are supposed to have a 'pure' bloodline that has been undiluted by marriage - an ideal object of study for geneticists.

In 1989, two hundred tribal members gave blood to researchers to help with a diabetes study. No money changed hands, but fifteen Havasupa'i were to take college-level summer-school classes for free. Then they learned that the study had been used for research about schizophrenia and inbreeding, and migration (ironically, the original study seeking a genetic basis for diabetes produced no significant results). This was particularly distressing to the tribe, as the research concerning migration contradicted one of their core spiritual beliefs: namely, that they originated in, and have always lived in, the Grand Canyon. They believe that they did not migrate from Asia via the Bering Strait as genetic research has in fact shown.

In 2004, they sued Arizona State University - the institution responsible for collecting their DNA - for not providing ethical oversight on the use of the samples. The case is still working its way through the courts. The tribe's lawyers asserted that the defendants had "violated their clients' privacy, as well as their cultural, religious, and legal rights." Many of the research results were stigmatizing and contradictory to tribal history and ancestry. The study, indeed, had drifted far afield from its original research on diabetes. Yet the plaintiffs' case was dismissed because they allegedly did not meet the requirements for filing a lawsuit. In 2008, the Arizona court of appeals cleared the way for the Havasupa'i tribe to sue the state university system for improper use of the blood samples taken in 1989. The fifty-million-dollar lawsuit that the tribe is pressing for claims that the blood was not only taken under false pretences but was also used to undermine tribal members' beliefs about the world.

In Moore vs Regents of the University of California,1 a patient sued his physician and a biotechnology company for using his biopsied tissue, his tangible personal property, without his consent and transforming it into a commercial cell line. The court sided with the interests of the defendants. Its reasoning was that giving the patient a property right to his tissue would impede progress and "destroy the economic incentive to conduct important medical research."

Western scientific research has rightly caused great unease and wariness among many Indigenous peoples. In the name of scientific knowledge, sacred stories and sacred sites have been made public, biological material has been used to contradict and stereotype peoples, and Indian2 property has been stolen and displayed in museums all over the world; all of this perpetrated under the cover of scientific knowledge. Moreover, a history of broken promises and other misdeeds lies just below the surface - all of which accounts for a deep-seated mistrust of the federal government and other state institutions.

Joyce Oberly (Comanche, Osage, Chippewa /Cree) and Jocelyn Macedo (Yurok and Hupa) point out that, although it may seem to be a contradiction, research 'on' Indians historically excludes Indians, misappropriating, misinterpreting, and, ultimately, misrepresenting Native culture and knowledge. …

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