Returning personalized, genetic health test results to individuals of African descent or ancestry in precision medicine research.

Rachele M Hendricks-Sturrup, Nora Emmott, Maryam Nafie, Lauren Edgar,Tracey Johnson-Glover,Kurt D Christensen,Stephanie Argetsinger,Christine Y Lu

Health affairs scholar(2023)

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摘要
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 ( n
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