Vence L. Bonham Jr. '82: An Ethical Voice in the Role of Race in Genomics
The National Institutes of Health (NIH) has appointed Vence L. Bonham, Jr. '82 as senior advisor to the Director on Societal Implications for Genomics. On leave from his position as associate professor at Michigan State University's College of Human Medicine, Vence will provide guidance on policy and ethical issues that arise at the intersection of law and genomics.
With Michigan State since 1995, Vence has taught courses on medical law and policy. He says, "my research focused on health disparities and the ethical, legal, social, and political implications of genomic discoveries for communities of color." Prior to joining Michigan State as faculty, Vence worked as a higher education lawyer at Eastern Michigan University.
Vence was an investigator on the "Communities of Color and Genetics Policy Project," which began in March 1999 and was funded by the National Human Genome Research Institute. The project engaged minority communities in conversations about genomic research and its resulting technology. The consultations helped develop recommendations for professional standards, laws, and institutional policies on the use and application of genomic research. In February 2002, members of the project, investigators, and community participants briefed members of Congress and members of the White House policy staff about the concerns and recommendations of the communities related to genetics policies.
Although genetic tests for diseases such as sickle cell anemia and Tay-Sachs may lead to better health for the groups they disproportionally afflict, the same information has the potential to lead to discrimination in insurance, adoption, and employment. NIH's 2003 article in Nature, "A Vision for the Future of Genomics Research," says "The U.S. Equal Employment Opportunity Commission has ruled that the Americans with Disabilities Act should apply to discrimination based on predictive genetic information, but the legal status of that construct remains in some doubt. Although the executive order protects U.S. government employees against genetic discrimination, this does not apply to other workers. Thus, many observers have concluded that effective federal legislation is needed, and the U.S. Congress is currently considering such a law."
The relationship between race, ethnicity, and genomics is further complicated by a variety of environmental factors including access to health care, exposure to pollutants, diet, and geographical location that contribute to concentration of diseases in various ethnic or racial groups. Genetic testing that does not take these variables into account may inaccurately predict future health and unfairly make these groups uninsurable and unemployable. "The field is changing so quickly," says Vence. "It is growing and expanding. Issues change almost daily. . . . My job is to bring people into a conversation about what all this means."
"A number of new tests of genetic symptoms are about to come on line: colon cancer, diabetes," says Vence. "Technology is moving so quickly, the tests will be on line before policies are ready. There is a need for lawyers that are knowledgeable and interested in developing careers at the intersection of genomics and law." Fortunately, Vence is already on the case.