258491 Minority Community Engagement in Genetics and Genomic Research: Perspectives of Urban Black Community Leaders

Wednesday, October 31, 2012 : 8:30 AM - 8:50 AM

Aaron Buseh, PhD, MPH, MSN , College of Nursing, University of Wisconsin - Milwaukee, Milwaukee, WI
Sandra Underwood, PhD, FAAN , College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
Patricia E. Stevens, RN, PhD, FAAN , College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
Leolia Townsend, MS, MA , College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
Sheryl T. Kelber, MS , College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
Background: Genetics/genomic research promises answers about health disparities. Paradoxically, U.S. Blacks, who bear disproportionate disease burden, participate at low rates.

Purpose: As the first stage in community-based participatory mixed-methods research to understand how best to sustain engagement of urban Blacks in genetics/genomic science, we investigated perspectives of Black community leaders in a large Midwestern city.

Methods: Four focus groups involving African American and African Immigrant leaders (N=27), were conducted exploring perceptions about genetics/genomic research and potential benefits to Blacks in the U.S. should they participate in such research.

Result: Pervasive skepticism about medical research and lack of trust in health care systems characterized discussions among Black leaders. Tuskegee and Henrietta Lacks figured large in the need to protect their communities from harm and exploitation. Connections between genetics and family history made research in this area immediately personal, pitting intrusion into private affairs against possible solutions for succeeding generations. Lack of control over genetics samples, once donated, raised fears about how they might be used to stigmatize or extract costs from families and communities. Conditions deemed necessary for engagement in genetics/genomic research included: culturally-relevant genetics/genomics education using popular media, trusted community insiders in leadership positions on research teams, and apparent benefits to individuals and their families.

Conclusions: Black community leaders are key gatekeepers and community guardians who cannot be bypassed in capacity-building for genetics research in minority populations. Grassroots community partnerships operative from design through implementation and utilization of research results are key to building trust and overcoming trepidation and resistance.

Learning Areas:
Chronic disease management and prevention
Diversity and culture
Ethics, professional and legal requirements
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs

Learning Objectives:
1. Define the unique challenges and opportunities of conducting genetics and genomic studies in the urban African American and African immigrant communities; 2. Describe perceptions and attitudes of urban Black leaders in engaging Black communities in genetic research; and, 3. Discuss the pivotal role of urban community leaders in launching and sustaining genetic projects in urban Black communities.

Keywords: Genetics, Community-Based Partnership

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: Not applicable

Qualified on the content I am responsible for because: I am principal investigator on the project. I wrote the grant for funding and was responsible to developing and implementing the study. I conducted all the focus groups, played major role coding and analyzing all the data obtained. I also played major role in the analysis of the data collected. My research has centered on health disparities and community-based participatory research.
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.