"I Have Come Because I See You Care About Me": Recruiting Older Black Americans for Genomic Research.

Abstract

The lack of diversity in genomic studies is a disparity that influences our understanding of human genomic variation and threatens equity in the benefits of precision medicine. Given our current genomic research with Black older adults, we conducted a qualitative study to elucidate participants' knowledge, attitudes, and beliefs about genomic research and research participation and what factors contribute to their willingness to participate and to gain insights into barriers that researchers may have in recruiting Black Americans. We conducted semistructured interviews (N=16) with previous genomic research participants, and an inductive thematic approach was used to code and interpret the data. The mean age was 70, 82% reported <$15,000 annual income, and 100% participated in genomic research. The results note that genomic research is poorly understood despite participation in prior genomic studies, and cultural beliefs about health and managing health impact an individual's research participation. Although not all participants identified with historical distrust, those who did report health system distrust also contributed distrust in research. Relationship building facilitates research participation, especially when perceived as personally relevant and meaningful. Participant incentives and convenience to engage in the study are less important if the personal benefits or relevance of the research are clear. Our results provide new context into the importance of relationship building and research literacy and highlight new considerations for engaging racially diverse populations in research.