The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

Abstract

Abstract Background Racial/ethnic minority populations in the United States are consistently underrepresented in genetic research. Large‐scale public participation is required to ensure discoveries from precision medicine research are applicable to everyone. To evaluate views toward and facilitators of participation among minority populations in the United States, we conducted a systematic review of literature. Methods Six databases were searched for articles published from 2005 to 2018 assessing minority populations’ views and/or willingness to participate in genetic research. A thematic framework was applied to extracted data to synthesize findings, and the Socio‐Ecological Model was used to evaluate papers. Results Review of 2,229 titles and abstracts identified 27 papers (n = 8 qualitative, n = 19 quantitative). Themes included knowledge of genetics, engagement in research, facilitators and barriers to participation, and cultural considerations. Understanding of genetics was low, yet the majority of participants were willing to participate in genetic research among all populations included in the literature (range: 57%–97%). Recommendations for research included utilizing community‐based participatory approaches, evaluating participants’ informational needs, incentivizing participation, and providing direct benefits (e.g., genetic test results). Conclusion Results could influence future study designs that incorporate all levels of the Socio‐Ecological Model and better meet the needs of underrepresented groups, thereby ensuring precision medicine research findings are applicable to all.

Keywords

• genetic research
• precision medicine research
• racial/ethnic minorities
• research participation strategies