299620
Barriers, Enablers and Strategies for Increasing Participation in Medical Genetic Research and Biobanking: Perspectives of Black African Immigrants/Refugees
Purpose: This study explores barriers and enablers of Black African immigrants/refugees towards participating in genetic studies and suggests implications for public health research, policy, and practice.
Methods: As the second stage of a community-based participatory research mixed methods study, in-depth interviews were conducted with (n = 34) Black African immigrants/refugees exploring perceptions of genetic/genomic research, approaches for achieving equitable distribution of benefits in discoveries and strategies to promote sustained engagement of Black African immigrants/refugees communities in genetic studies including biobanking.
Results: Participants expressed personal and structural/systems barriers to participating in genetic research. They expressed concerns that genetic testing and discoveries will inevitably lead to differential access to genetic technology, discrimination and denial of resources thus increasing health disparities and social injustices. Critical among the enablers to participating in genetic research were the need for building genuine partnerships with community leaders including involving minority scholars from their communities in such initiatives.
Conclusions: Enlisting Black African immigrants/refugees in genetic research opens opportunities to study conditions that disproportionately affect this sub-population. Initiating genetic research projects in ethnic minority communities must be guided by communal dialogue with community input incorporated early and sustained during all project phases.
Learning Areas:
Assessment of individual and community needs for health educationDiversity and culture
Public health or related public policy
Learning Objectives:
Describe and contextualize potential barriers (personal and structural) to recruitment and participation in genetics research including biobanking among Black African immigrants/refugees
Describe and contextualize potential enablers (facilitators) to participation in genetic research including biobanking among Black African immigrants/refugees and
Describe the challenges and opportunities for developing and implementing genetic/genomics research in Black African immigrant/refugees communities
Keyword(s): Genetics, Community-Based Research (CBPR)
Qualified on the content I am responsible for because: I am an associate professor at the University of Wisconsin-Milwaukee College of Nursing. I chair the University Institutional Review Board. My research focuses on healthcare disparities. My research focuses on communal Genetics/Genomics and ethics in research. I am principal investigator on a three phases community-based participatory research project intended to engage and sustained Blacks in genetics/genomics research including biobanking. I led writing of the grant and implementation of all phases of the study.
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.