Promoting Inclusive Recruitment: a Qualitative Study of Black Adults' Decision to Participate in Genetic Research.

Abstract

Underrepresentation of Black individuals in genetic research is a longstanding issue. There are well-documented strategies to improve the enrollment of Black participants; however, few studies explore these strategies—as well as the barriers and facilitators for participation—by sampling Black people who have previously participated in genetic research. This study explores the decision-making process of Black adults who have participated in genetic research to identify best practices in the recruitment of Black subjects in genetic research. We conducted 18 semi-structured interviews with Black adults with prior research participation in genetic studies housed at an urban academic medical center in the United States of America (USA). An online survey was conducted with the participants to gather demographic data and information on prior research participation. Trust in research was ascertained with the Corbie-Smith Distrust in Clinical Research Index. Two participants scored high levels of distrust using the validated index. Using thematic content analysis, 4 themes emerged from the interviews: (1) Participants are active players in health system, (2) information is power, and transparency is key, (3) therapeutic alliances and study characteristics facilitate participation, and (4) race pervades the research process. The decision to participate in genetic research for the participants in our study was prompted by participants’ internal motivations and facilitated by trust in their doctor, trust in the institution, and ease of participation. Most participants viewed their enrollment in genetic research in the context of their own racial identity and the history of medical racism in the USA.