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

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 = 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.

African American Nurses' Perspectives on Genomic Medicine Research.

Background: There is a lack of African American (AA) community engagement in genomic medicine research. Recent popular interest in the experience of AAs, such as that of Henrietta Lacks, has perhaps prompted interest in research on how AA nurses can provide strategies to better engage AA communities in genomic medicine research. Methods: The authors conducted one-on-one semi-structured interviews with 11 National Black Nurses Association (NBNA) chapter leaders from 8 different US states, representing 782 NBNA members. Results: Our results quantified NBNA chapter leader agreement on known themes from the literature, captured newly emerging themes, and produced a set of actionable strategies to help overcome barriers to AA engagement in genomic medicine research that fall under 6 themes: (1) engagement, support, information dissemination, and implementation recommendations in general and to address health disparities; (2) addressing language barriers; (3) addressing research implementation barriers; (4) getting physicians to participate; (5) overcoming privacy concerns; and (6) nursing education recommendations. Conclusions: Actionable strategies presented herein can help researchers better engage AA communities in genomic medicine research.

Exploring African American community perspectives about genomic medicine research: A literature review.

Genomic medicine research is an important topic in the African American health care community. African American nurses and advance practice nursing professionals are poised to encourage and educate themselves and their communities about the importance of diversity in genomic medicine research. The Southern Nevada Black Nurses Association, a chapter within the larger National Black Nurses Association's, recently engaged in the National Institutes of Health All of Us research program to educate their members about formularies and other treatment modalities that could clinically benefit African-Americans and other populations of color. During this event, the Southern Nevada Black Nurses Association discovered that National Black Nurses Association members held ethical, legal, and social concerns about engaging in genomic medicine research that align with respective concerns reported in the literature. In this review, we discuss National Black Nurses Association concerns and how they relate to qualitative themes emerging from the literature and a recent National Academies of Science, Engineering, and Medicine event on disparities in access to genomic medicine. We conclude that researchers should engage with African American health community leaders to effectively engage the African American community in genomic medicine research and help ensure that genomic medicine does not exacerbate existing health disparities.