A content analysis of the views of genetics professionals on race, ancestry, and genetics.

Abstract

Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics professionals to a survey about their views on race, genetics, and ancestry across the domains of science, medicine, and society. Through a qualitative content analysis of free-text comments from 515 survey respondents, we identified key themes pertaining to multiple meanings of race, the use of race as a proxy for genetic ancestry, and the relevance of race and ancestry to health. Our findings suggest that for many genetics professionals the questions of what race is and what race means remain both professionally and personally contentious. Looking ahead as genomics is translated into the practice of precision medicine and as learning health care systems offer continued improvements in care through integrated research, we argue for nuanced considerations of both race and genetic ancestry across research and care settings.

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Citation

Published Version (Please cite this version)

10.1080/23294515.2018.1544177

Publication Info

Nelson, Sarah C, Joon-Ho Yu, Jennifer K Wagner, Tanya M Harrell, Charmaine D Royal and Michael J Bamshad (2018). A content analysis of the views of genetics professionals on race, ancestry, and genetics. AJOB empirical bioethics, 9(4). pp. 222–234. 10.1080/23294515.2018.1544177 Retrieved from https://hdl.handle.net/10161/19162.

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Scholars@Duke

Royal

Charmaine DM Royal

Robert O. Keohane Professor of African & African American Studies

Charmaine Royal is the Robert O. Keohane Professor of African & African American Studies, Biology, Global Health, and Family Medicine & Community Health at Duke University. She directs the Duke Center on Genomics, Race, Identity, Difference and the Duke Center for Truth, Racial Healing & Transformation.

Dr. Royal’s research, scholarship, and teaching focus on ethical, social, scientific, and clinical implications of human genetics and genomics, with an emphasis on issues at the intersection of genetics and "race". Her specific interests and primary areas of work include genetics and genomics in African and African Diaspora populations; sickle cell disease and trait; public and professional perspectives and practices regarding "race", ethnicity, and ancestry; genetic ancestry inference; and genotype-environment interplay. A fundamental aim of her work is to dismantle ideologies and systems of racial hierarchy in science, healthcare, and society. She serves on numerous national and international advisory boards and committees for government agencies, professional organizations, research initiatives, not-for-profit entities, and corporations.

Dr. Royal obtained a bachelor’s degree in microbiology, master’s degree in genetic counseling, and doctorate in human genetics from Howard University. She completed postgraduate training in ethical, legal, and social implications (ELSI) research and bioethics at the National Human Genome Research Institute of the National Institutes of Health, and in epidemiology and behavioral medicine at Howard University Cancer Center.


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