Recruitment and retention of African-Americans for genetic studies

Genetic risk factors differ across populations and researchers are challenged to avoid bias in genetic research by inclusion of minority groups. Recognition of factors influencing decision-making of potential participants is essential for development of successful recruitment and retention strategies. The purpose of this literature review was to determine the attitudes and perceptions of African-Americans toward genetic research, the factors that influence their decision-making for research participation, and to identify strategies that enhance recruitment and retention. Findings were organized using an ecological framework. Decision-making is influenced at the individual, community, and public policy levels. At the individual and family levels interpersonal concerns about confidentiality, coupled with a desire to know more about genetics were evident. General support for genetic research and recognition that non-participation could lead to another level of discrimination was apparent at the community level. Yet, there was apprehension. Literature specific to recruitment and retention of subjects with DNA collection is limited. Epidemiologic studies demonstrate implementation of strategies but provide minimal information on retention or non-participation. Studies related to genetic testing for disease indicate effective strategies in the context of individual risk. The literature suggests that African-Americans generally have a positive attitude toward genetic research but are consistently less willing to participate. Approaches likely to enhance enrollment include genetics education, culturally relevant materials, financial incentives, frequent contact, recruiters with a similar cultural background, and clarification of DNA handling. Further delineation of factors that affect enrollment of African-Americans is crucial to prevent disparity and bias in genetic research.