Missing voices: The lack of community perspectives in the pursuit of race-based medicine

The increased focus on reducing health inequalities and the growing use of genetics for clinical and population based research and practice, has raised a number of questions (both new and old) concerning the social and ethical implications of utilizing genetic information in addressing health disparities. For example, many scholars are concerned that the focus on genetics as a fundamental cause of health disparities may lead to the diminution of the roles of social, political, and environmental factors in causing health inequities between populations. Additionally, many argue that the inclusion of genetic information in disparities research inappropriately perpetuates the view that socially constructed racial categories have biological significance, and thus should not be used in medical or public health research.

These concerns came to the forefront in 2003 when the FDA approved BiDil®, the first "race-based medicine," (RBM) to treat heart failure exclusively among African Americans. The question of whether these disparities could be addressed better through a biomedical approach like this one, or one that focuses primarily on the social determinants of health became not only a question for academic debate, but a real issue for communities. RBM is expected to thrive as the pharmaceutical industry increasingly sees the minority communities as a niche markets. There is currently an overwhelming lack of community-based assessment of genomic applications, such as RBM, particularly in the scientific literature that currently defines evidence. This dearth of information suggests that next steps for public health genomics are to accelerate meaningful community engagement and inclusion.