AI Article Synopsis

  • Many biobanks and epidemiological studies are now revealing genetic results to participants, particularly those involved in the NIH's All of Us Research Program, but challenges arise for underrepresented groups like individuals of African descent.
  • There's a significant lack of research on drug-gene interactions for these groups, which leads to uncertainty when participants receive their genetic risk information.
  • The report emphasizes the need for tailored disclosure protocols by summarizing studies that identify key themes from African Americans' perspectives, recommending strategies like improved education and personalized support to enhance the return of genetic results.

Article Abstract

Today, many epidemiological studies and biobanks are offering to disclose individual genetic results to their participants, including the National Institutes of Health's All of Us Research Program. Returning hereditary disease risks and pharmacogenetic test results to study participants from racial/ethnic groups that are historically underrepresented in biomedical research poses specific challenges to those participants and the health system writ large. For example, individuals of African descent are underrepresented in research about drug-gene interactions and have a relatively higher proportion of variants of unknown significance, affecting their ability to take clinical action following return of results. In this brief report, we summarize studies published to date concerning the perspectives and/or attitudes of African Americans engaged in genetic research programs to anticipate factors in disclosure protocols that would minimize risks and maximize benefits. A thematic analysis of studies identified ( = 6) lends to themes centered on motivations to engage or disengage in the return of results and integrating research and care. Actionable strategies determined in reaction to these themes center on ensuring adequate system and health education support for participants and personalizing the process for participants engaging in return of results. Overall, we offer these themes and actionable strategies as early guidance to research programs, and provide recommendations to policy makers focused on fair and equitable return of genetic research results to underrepresented research participants.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10734905PMC
http://dx.doi.org/10.1093/haschl/qxad066DOI Listing

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