186063 Missing voices: The lack of community perspectives in the pursuit of race-based medicine

Sunday, October 26, 2008

Jodyn E. Platt, MPH , Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, MI
Aaron Goldenberg, MPH , Department of Bioethics, Case Western Reserve University, Cleveland, OH
Tomi Ogundimu , Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, MI
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.

Learning Objectives:
1. Understand and appreciate the value of including community-based perspectives when evaluating approaches to reducing health disparities. 2. Describe current efforts to engage communities in genetics research and policy 3. Articulate the major ethical issues in pursuing race-based medical research from a community perspective. 4. Describe potential roles for the public health community in promoting community participation in the design and implementation of clinical and public health research.

Keywords: Ethics, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have lead efforts in the development of community-centered and community-based genetics education, and genetics and health disparities policy advocacy. I received my Master’s in Public Health from the University of Michigan in 2005 and have experience in working on issues of public health ethics, workforce development, health disparities, communicable disease prevention, and access to health care.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.