A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research

被引:17
|
作者
Rebbeck, Timothy R. [1 ,2 ]
Bridges, John F. P. [3 ]
Mack, Jennifer W. [2 ]
Gray, Stacy W. [4 ]
Trent, Jeffrey M. [5 ]
George, Suzanne [2 ]
Crossnohere, Norah L. [3 ]
Paskett, Electra D. [3 ]
Painter, Corrie A. [6 ,7 ]
Wagle, Nikhil [2 ,6 ,7 ]
Kano, Miria [8 ,9 ]
Henderson, Patricia Nez [10 ]
Henderson, Jeffrey A. [10 ]
Mishra, Shiraz, I [8 ,9 ]
Willman, Cheryl L. [8 ,9 ,11 ]
Sussman, Andrew L. [8 ,9 ]
机构
[1] Harvard TH Chan Sch Publ Hlth, Boston, MA USA
[2] Dana Farber Canc Inst, 1101 Dana,450 Brookline Ave, Boston, MA 02215 USA
[3] Ohio State Univ, Columbus, OH 43210 USA
[4] City Hope Natl Med Ctr, Duarte, CA USA
[5] Translat Genom Res Inst, Phoenix, AZ USA
[6] Broad Inst MIT & Harvard, Broad Inst, Cambridge, MA 02142 USA
[7] Count Me In, Cambridge, MA USA
[8] Univ New Mexico, Comprehens Canc Ctr, Albuquerque, NM 87131 USA
[9] Univ New Mexico, Hlth Sci Ctr, Albuquerque, NM 87131 USA
[10] Black Hills Ctr Amer Indian Hlth, Rapid City, SD USA
[11] Mayo Clin, Mayo Clin Comprehens Canc Ctr, Rochester, MN USA
来源
JAMA HEALTH FORUM | 2022年 / 3卷 / 04期
关键词
CANCER; BARRIERS; RETURN;
D O I
10.1001/jamahealthforum.2022.0603
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Precis 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.
引用
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页数:12
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