Online Program

Knowledge and future expectations about medical genetics and use of genetic information among black African immigrants/refugees

Tuesday, November 5, 2013

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
Sheryl T. Kelber, MS, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
Leolia Townsend, MS, MA, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI
BACKGROUND: Black African immigrants/refugees bear disproportionate disease burden but participate in genetic studies at low rates. Pervasive skepticism about biomedicine and history of unethical research by Western researchers in their home countries are reasons purported for low participation. Understanding their knowledge and expectations will inform utility of genetics research in healthcare interventions in Black African immigrant/refugee communities.

PURPOSE: The purpose of this study was to investigate Black African immigrants' knowledge, expectations and perspectives regarding human-genetics research. METHODS: As the third stage in a community-based participatory genetics project, a convenience sample (n=212) of Black African immigrants/refugees were administered a survey questionnaire about knowledge and future expectations regarding use of genetics in healthcare and consequences for individuals and society. Descriptive and multivariate analyses were conducted.

RESULTS: Participants were originally from 29 sub-Saharan African countries with average age 38.91years and average time residing in the US of 11.38 years. One-third anticipated dichotomous society¬ópeople with 'good' genes versus people with 'bad' genetic predisposition. Majority had high expectations that genetics research would identify risks/factors for prevention/treatment. In multivariate analyses, age, gender, length of time living in the US and familiarity with genetic research, were all associated with knowledge of genetics. Age, gender, time in the US and familiarity with genetic research explained 28.9% of the variance. CONCLUSIONS: Educational programs about genetics in healthcare should take into account pre-existing knowledge, views and expectations of ethnic populations. Sustained engagement with Black African immigrants/refugees communities providing continued discussions about concerns and benefits related to genetic research is imperative.

Learning Areas:

Chronic disease management and prevention
Diversity and culture
Public health or related public policy
Public health or related research

Learning Objectives:
Describe the unique challenges and opportunities of conducting genetics and genomic studies in the Black African immigrant communities. Explore and describe the knowledge level and expectations of a sample of Black African immigrants about medical genetics/genomic science. Discuss strategies for sustaining genetics/genomics projects in Black African immigrant communities.

Keyword(s): Genetics, Ethnic Minorities

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 an associate professor at the University of Wisconsin-Milwaukee. I chair the University Institutional Review Board. I have published extensively on health disparities and stigma experiences among HIV-infected urban Blacks. I am principal investigator on the current mixed-methods three phases community-based participatory research project intended to engage and sustained Blacks in genetics and genomic 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.