Exploration of Potential Benefits and Disadvantages of Medical Genetics Research and Biobanking: Perspectives of Black African Immigrants/Refugees

Monday, 18 November 2013: 10:00 AM

Aaron Buseh, PhD, MPH, MSN1
Sandra Underwood, PhD, RN, FAAN2
Patricia E. Stevens, RN, PhD, FAAN1
Sheryl T. Kelber, MS3
Leolia Townsend, M.S., M.A.1
(1)College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
(2)College of Nursing, University of Wisconsin Milwaukee, Milwaukee, WI
(3)Werley Center for Nursing Research and Evaluation-College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI

Learning Objective 1: The learner will be able to dentify the unique challenges and opportunities of conducting genetics/ genomic research in African immigrant/refugees communities.

Learning Objective 2: The learning will be able to describe perceptions and attitudes of Black African immigrants/refugees in participating in genetic research.

Background:  Critical dialogues about genetic research often have not involved the perspectives of ethnic populations, in particular, the voices of Black African immigrants/refugees. Participation of immigrant populations in genetics research, including bio-banking for personalized healthcare, is warranted as science advances.

 Purpose: The purpose of this study was to explore perspectives of Black African immigrants/refugees regarding advances in medical genetics research and its use in healthcare.

 Methods:  As the second stage in a community-based participatory research project, in-depth interviews were conducted with (n=34) Black African immigrants/refugees from across a range of socioeconomic status exploring perceptions about advances in genetic/genomic research, strategies for achieving more equitable distribution of benefits in genetics discoveries/innovations and strategies to promote their sustained engagement. Participants averaged in age 49.8 years, lived in the US on average 19.5 years, and were highly educated with 29% completing college and 50% having graduate degrees. Data were analyzed thematically.

Results: A range of perceptions, expectations and concerns emerged regarding genetic research. Participants suggested that there may be benefits to genetics research to themselves, their families and society. Many expressed concerns/fears that genetics crosses the ethical threshold presenting false optimisms while tempering with the human body that was created by God. Most were untrusting asking if their genetic information could be used to discriminate against them denying access to resources. Participants suggested scientists establish true partnerships with Black African immigrant communities ensuring transparency throughout the research process while focusing on conditions affecting the Black African immigrant/refugee communities as well as their families in sub-Saharan Africa.

 Conclusion: Incorporating Black African immigrants/refugees in genetic research opens new opportunities to study genes and effects in prevention, diagnosis and treatment for many conditions. Genetic research in immigrant populations must be balanced with ethical, legal and social implications and with community members input to ensure sustainable research.