Curriculum for Genetic Researchers

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An Online Curriculum for Ethical, Social, and Legal Issues Related to Genetic Research on Racial and Ethnic Groups

Sheila M. Rothman, Ph.D., Sherry I. Brandt-Rauf, J.D.
With the assistance of Nathan Drummond

Over the past decade, genetic research on disease susceptibility, drug response, and evolutionary history has increasingly involved racial and ethnic groups, even as racial and ethnic categories in biomedical research have become more controversial. These developments have led the National Institutes of Health (NIH) and other medical and scientific organizations to call for better communication between investigators and communities so as to enable them to share each other’s understandings of the methods and goals of genetic research, the social risks involved, and the importance of community consultation and informed consent.

This syllabus offers a comprehensive overview of the issues that scientists face in communicating and collaborating with racial and ethnic groups in genetic research. The information provided originates in interviews with genetic researchers and community organizations, along with supplemental research, which were part of a project: “A Paradox of Genetic Research: Race, Ethnicity & Disease” NHGRI R01 (HG002517-01A1) 2003-2006.