Understanding the challenges in recruiting blacks to a longitudinal cohort study: the Adventist health study

This paper presents findings from formative research exploring Black Seventh-day Adventist church members' attitudes about Black non-participation in past studies, and suggestions for recruiting 45,000 Blacks to an upcoming longitudinal cohort study. Data were collected in California and Pennsylvania, using 15 key informant interviews and 6 focus groups. Key findings supported and elucidated existing literature on the barriers to minority recruitment, and included: a general mistrust of the medical/scientific community; a perception that providing informed consent relinquishes, rather than protects, an individual's rights; a perception of being "studied" rather than "studying," due to the paucity of Black investigators; and a perceived lack of cultural sensitivity in the recruitment of Blacks, and in the conduct of the research itself. Building trust throughout the process, from clearly demonstrating the benefits of participation, at the individual and community level, to including Blacks in the study design from conceptualization to data analysis and presentation, emerged as a critical component in garnering Black participation in future studies.