TY - JOUR
T1 - A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research
AU - Rebbeck, Timothy R.
AU - Bridges, John F.P.
AU - Mack, Jennifer W.
AU - Gray, Stacy W.
AU - Trent, Jeffrey M.
AU - George, Suzanne
AU - Crossnohere, Norah L.
AU - Paskett, Electra D.
AU - Painter, Corrie A.
AU - Wagle, Nikhil
AU - Kano, Miria
AU - Nez Henderson, Patricia
AU - Henderson, Jeffrey A.
AU - Mishra, Shiraz I.
AU - Willman, Cheryl L.
AU - Sussman, Andrew L.
N1 - Funding Information:
The author would like to thank Süveyda Bayraktar for her diligent assistance in collecting the necessary documents on which this article is based.
Publisher Copyright:
© 2022 by the Author(s).
PY - 2022/4/15
Y1 - 2022/4/15
N2 - Importance: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. Observations: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. Conclusions and Relevance: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation..
AB - Importance: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. Observations: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. Conclusions and Relevance: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation..
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U2 - 10.1001/jamahealthforum.2022.0603
DO - 10.1001/jamahealthforum.2022.0603
M3 - Review article
AN - SCOPUS:85140827084
SN - 2689-0186
VL - 3
JO - JAMA Health Forum
JF - JAMA Health Forum
IS - 4
M1 - e220603
ER -