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Case Study: When Informed Consent is Unclear

A Native American tribe agreed to give blood samples to a local university research group in hopes that they could discover clues as to why the tribe suffered from high rates of diabetes. This tribe lives in an extremely isolated region: the people have a high degree of shared ancestry and there is minimal immigration into the area, leading to a gene pool that is largely stagnant (meaning new versions of genes are rarely introduced). In this particular tribe, blood has a significant spiritual importance.  The tribe eventually learns that the samples they had provided were used for more than the intended diabetes study. When the researchers were unable to find any genetic link to diabetes in the tribe, they turned to other questions. In fact, the University researchers were using the samples to study the genetic underpinnings of mental illness and the tribe’s geographical origins.

When the tribe found out how their samples were actually being used, they were outraged. Although members of the tribe had signed a consent allowing their samples to be used for “wider-ranging genetic studies”, they maintain that they verbally agreed only to the diabetes research. In fact, the informed consent document was deliberately simpler than is typical because many in the tribe are barely literate.

The tribe asks the University for monetary restitution for what they perceive to be a deliberate misrepresentation of the intentions of the researchers. The University maintains it was an honest mistake, and technically they did nothing wrong based on the inform consent document signed by the tribe.

Should the University compensate the tribe?

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Based on a true story:

Harmon, Amy. Indian Tribe Wins Fight to Limit Research of Its DNAThe New York Times 21 April. 2010.