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. Issue 2 (23rd December 2019)

• Record Type: Journal Article
• Authors: Fisher, Elena R.; Pratt, Rebekah; Esch, Riley; Kocher, Megan; Wilson, Katie; Lee, Whiwon; Zierhut, Heather A.
• Is Part Of: Molecular genetics & genomic medicine. Volume 8:Issue 2(2020)
• Page Start: n/a
• Page End: n/a
• Publication Date: 2019-12-23
• Subjects: genetic research -- precision medicine research -- racial/ethnic minorities -- research participation strategies; Medical genetics -- Periodicals; Genomics -- Periodicals; 616.042
• DOI: 10.1002/mgg3.1099
• Languages: English
• ISSNs: 2324-9269

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. Abstract : This systematic review details the general public's knowledge of genetics, engagement and participation in genetic research, facilitators and barriers to participation in research, and cultural considerations for conducting genetic research with minority populations. We conclude that the majority of participants of all racial and ethnic backgrounds are willing to participate in precision medicine research studies. However, there are many different facilitators and barriers to participation that may not be as simple as previously outlined in the literature and which must be collectively addressed in order to create more inclusive research practices.