Genetic Research May Have Unintended Consequence For Ethnic Groups

Main Category: Genetics
Article Date: 11 Dec 2007 - 1:00 PDT

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Genetic research that holds the promise of one day preventing and curing disease may also pose an unrecognized threat of tearing apart minority groups. In an article written for The Journal of Law, Medicine & Ethics, bioethics professor Joan McGregor, Ph.D., of Arizona State University, explains how genetic research can devastate minority communities, such as Native American populations.

Ethnic groups attract researchers because of their genetic differences from the general population. These groups suffer disproportionately from disease, and seemingly would have much to gain from genetic studies. Deaths from alcoholism and diabetes, for example, are much higher among Native Americans than other ethnic groups. Researchers unfamiliar with Native American culture may assume they're providing the group a great service. Seldom do they realize their study can destroy the group's esteem.

"Genomic research can have significant, but sometimes unrecognized, harm to minority groups," McGregor said.

Discrimination from employers or insurers is one potential consequence of a group being associated with a genetic disease. Results of genetic tests also could create legal snarls. Native Americans might lose historic land rights, McGregor suggests, if tests reveal discrepancies in their presumed lineage. The greatest threat she sees is loss of identity. Tribes build their culture on historical narratives. Studies that refute their ancestry would destroy their sense of who they are.

To minimize the risk of group harms, McGregor recommends researchers go beyond the requirement of individual informed consent. She urges them to include a Native American on the board that reviews their study and to also obtain the group's consent from a tribal leader.

"Research ethics must ensure that it addresses the value difference of discreet populations," McGregor said.

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