Enhancing Participation of Underrepresented Groups in Biomarker Studies

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A growing body of literature addresses the problems of recruitment and retention of minority participants in health related research programs.2 Historically, African Americans and other underrepresented groups have very low rates of participation in biomedical research.3"5 The results of both qualitative and quantitative studies have identified many common barriers to participation, as well as issues unique to each community. The majority of these studies have focused on African Americans, with fewer publications describing the attitudes and beliefs of Latinos and American Indians; however, the same themes consistently emerge across the groups. These six common factors include: 1) fear and mistrust based on episodes of unethical treatment by medical investigators or discrimination associated with government sponsored programs;6 2) low health literacy and lack of information about common health practices and chronic disease; 3) structural limitations in access to health for underrepresented populations; 4) sociocultural reliance on family and community for guidance and normative behaviors; 5) logistical barriers including the location of studies, transportation costs, time demands and study inclusion and exclusion criteria that may unintentionally limit enrollment of otherwise willing participants; and 6) perceived lack of cultural awareness and cultural competence on the part of many investigators and research staff.7