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 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...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2020-02-01
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| Series: | Molecular Genetics & Genomic Medicine |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/mgg3.1099 |
| _version_ | 1797301267911933952 |
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| author | Elena R. Fisher Rebekah Pratt Riley Esch Megan Kocher Katie Wilson Whiwon Lee Heather A. Zierhut |
| author_facet | Elena R. Fisher Rebekah Pratt Riley Esch Megan Kocher Katie Wilson Whiwon Lee Heather A. Zierhut |
| author_sort | Elena R. Fisher |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-07T23:19:05Z |
| format | Article |
| id | doaj.art-870297053909455bbb376d818988d8b6 |
| institution | Directory Open Access Journal |
| issn | 2324-9269 |
| language | English |
| last_indexed | 2024-03-07T23:19:05Z |
| publishDate | 2020-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Molecular Genetics & Genomic Medicine |
| spelling | doaj.art-870297053909455bbb376d818988d8b62024-02-21T08:58:11ZengWileyMolecular Genetics & Genomic Medicine2324-92692020-02-0182n/an/a10.1002/mgg3.1099The 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 studiesElena R. Fisher0Rebekah Pratt1Riley Esch2Megan Kocher3Katie Wilson4Whiwon Lee5Heather A. Zierhut6Department of Genetics, Cell Biology, and Development University of Minnesota Minneapolis MN USADepartment of Family Medicine and Community Health University of Minnesota Minneapolis MN USADepartment of Biochemistry, Molecular Biology, and Biophysics University of Minnesota Minneapolis MN USAUniversity of Minnesota Libraries Minneapolis MN USAUniversity of Minnesota Libraries Minneapolis MN USADepartment of Genetics, Cell Biology, and Development University of Minnesota Minneapolis MN USADepartment of Genetics, Cell Biology, and Development University of Minnesota Minneapolis MN USAAbstract 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.https://doi.org/10.1002/mgg3.1099genetic researchprecision medicine researchracial/ethnic minoritiesresearch participation strategies |
| spellingShingle | Elena R. Fisher Rebekah Pratt Riley Esch Megan Kocher Katie Wilson Whiwon Lee Heather A. Zierhut 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 Molecular Genetics & Genomic Medicine genetic research precision medicine research racial/ethnic minorities research participation strategies |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | genetic research precision medicine research racial/ethnic minorities research participation strategies |
| url | https://doi.org/10.1002/mgg3.1099 |
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