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Study Reveals African Americans' Perspectives on Genomic Research Participation

NEW YORK — Engagement strategies that welcome all research participants and enable the sharing of nuanced views could help medical institutions become viewed as more trustworthy, particularly among African Americans, a new study has found.

African Americans are underrepresented in genomics research, which in part stems from mistrust due to historical and continuing injustices in medical research and clinical care. To better understand how to best engage African-American research participants, researchers from the US National Human Genome Research Institute conducted focus groups of about four dozen African-American individuals who already had joined a genomics study to capture why they joined the study, how they wanted to be involved in the project, and their thoughts on which sequencing results from the study to return to participants.

As the researchers reported on Wednesday in the American Journal of Human Genetics, though some participants did harbor feelings of mistrust, most wanted to participate in research to contribute their views and represent their communities and further valued engagement approaches like focus groups that enable nuanced discussion of issues like return of results.

"Improving the engagement and recruitment of individuals from underrepresented groups to genomics research is critical," researchers led by NHGRI's Leslie Biesecker wrote in their paper. "Although there are historical and societal barriers that researchers cannot change, our findings highlight opportunities to implement policies that can improve on the trustworthiness of their institutions in the future."

The researchers invited 179 participants from the ClinSeq project to take part in one of six focus groups. All the contacted participants self-identified as African, African American, or Afro Caribbean. In all, 82 percent (49 participants) of those scheduled to attend the approximately 90-minute meetings did so. This high participation rate is consistent with previous findings that African-American individuals are willing to engage in research, the researchers noted.

In their discussion of motivations for joining ClinSeq, participants acknowledged there is mistrust of the medical field that could be a barrier to recruiting others to the study. Still, most participants said they joined the study to benefit their communities and improve the representation of African Americans in research, while others hoped for personal or family health benefits or joined out of curiosity.

The participants also noted that they were interested in being active partners or collaborators in the study and to help, for instance, with recruitment or describing study results to the community. They further often said that engagement activities should be offered to all participants and expressed preferences for approaches like focus groups that allow for nuanced discussions.

Within these focus groups, the researchers also asked the participants their thoughts on which research results were the most important to return. On individual worksheets, participants largely ranked life-threatening health implications as the most important to return, followed by ones that are preventable, treatable, or affect physical or mental health.

Discussions to develop a consensus ranking often centered on providing equal importance to conditions affecting physical and mental health and downplayed the need for ancestry-related results. The researchers noted that despite the importance given in individual rankings to the prioritization of preventable conditions, only two groups discussed it.

Still the findings suggested to the researchers that focus groups are an effective means of gathering participants' preferences for return of results and that discussions allowed participants to learn from one another and compromise to generate a consensus ranking.

"Given these benefits and the strong recommendations of our participants, we advocate for the use of modalities that allow as many participants as possible to express nuanced perspectives throughout the research process as a component of engaging African-American individuals in genomics research," the researchers wrote. "These approaches can be resource intensive and challenging to implement without changes to funding priorities but may be an important component of ensuring greater diversity in and engagement with study cohorts."

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