A Content Analysis of the Views of Genetics Professionals on Race, Ancestry, and Genetics

Overview

Journal AJOB Empir Bioeth

Specialties General Medicine
Medical Ethics

Date 2019 Jan 5

PMID 30608210

Citations 7

Authors

Sarah C Nelson

Joon-Ho Yu

Jennifer K Wagner

Tanya M Harrell

Charmaine D Royal

Michael J Bamshad

Affiliations

Soon will be listed here.

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.

Citing Articles

Science, Society, and Dismantling Racism.

Royal C Health Equity. 2023; 7(1):38-44.

PMID: 36744232 PMC: 9892922. DOI: 10.1089/heq.2022.29023.cro.

Recommendations on the use and reporting of race, ethnicity, and ancestry in genetic research: Experiences from the NHLBI TOPMed program.

Khan A, Gogarten S, McHugh C, Stilp A, Sofer T, Bowers M Cell Genom. 2022; 2(8).

PMID: 36119389 PMC: 9481067. DOI: 10.1016/j.xgen.2022.100155.

Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.

Walker A AJOB Empir Bioeth. 2022; 13(3):166-178.

PMID: 35435802 PMC: 10194829. DOI: 10.1080/23294515.2022.2063993.

Considerations of Racism and Data Equity Among Asian Americans, Native Hawaiians, And Pacific Islanders in the Context of COVID-19.

Gee G, Morey B, Bacong A, Doan T, Penaia C Curr Epidemiol Rep. 2022; 9(2):77-86.

PMID: 35342687 PMC: 8932682. DOI: 10.1007/s40471-022-00283-y.

Confronting Racism in Environmental Health Sciences: Moving the Science Forward for Eliminating Racial Inequities.

Payne-Sturges D, Gee G, Cory-Slechta D Environ Health Perspect. 2021; 129(5):55002.

PMID: 33945300 PMC: 8096378. DOI: 10.1289/EHP8186.

References

Watson M, Greene C . Points to consider in preventing unfair discrimination based on genetic disease risk: a position statement of the American College of Medical Genetics. Genet Med. 2001; 3(6):436-7. DOI: 10.1097/00125817-200111000-00011. View

Sankar P, Cho M . Genetics. Toward a new vocabulary of human genetic variation. Science. 2002; 298(5597):1337-8. PMC: 2271140. DOI: 10.1126/science.1074447. View

Burchard E, Ziv E, Coyle N, Gomez S, Tang H, Karter A . The importance of race and ethnic background in biomedical research and clinical practice. N Engl J Med. 2003; 348(12):1170-5. DOI: 10.1056/NEJMsb025007. View

Peterson S . The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions. Health Educ Behav. 2005; 32(5):627-39. DOI: 10.1177/1090198105278751. View

Manolio T, Chisholm R, Ozenberger B, Roden D, Williams M, Wilson R . Implementing genomic medicine in the clinic: the future is here. Genet Med. 2013; 15(4):258-67. PMC: 3835144. DOI: 10.1038/gim.2012.157. View

Stevens J . Racial meanings and scientific methods: changing policies for NIH-sponsored publications reporting human variation. J Health Polit Policy Law. 2004; 28(6):1033-87. DOI: 10.1215/03616878-28-6-1033. View

. The use of racial, ethnic, and ancestral categories in human genetics research. Am J Hum Genet. 2005; 77(4):519-32. PMC: 1275602. DOI: 10.1086/491747. View

Popejoy A, Fullerton S . Genomics is failing on diversity. Nature. 2016; 538(7624):161-164. PMC: 5089703. DOI: 10.1038/538161a. View

DAlessandro B, ONeil C, LaGatta T . Conscientious Classification: A Data Scientist's Guide to Discrimination-Aware Classification. Big Data. 2017; 5(2):120-134. DOI: 10.1089/big.2016.0048. View

10.

Price A, Patterson N, Plenge R, Weinblatt M, Shadick N, Reich D . Principal components analysis corrects for stratification in genome-wide association studies. Nat Genet. 2006; 38(8):904-9. DOI: 10.1038/ng1847. View

11.

Alexander D, Novembre J, Lange K . Fast model-based estimation of ancestry in unrelated individuals. Genome Res. 2009; 19(9):1655-64. PMC: 2752134. DOI: 10.1101/gr.094052.109. View

12.

Perez-Rodriguez J, Fuente A . Now is the Time for a Postracial Medicine: Biomedical Research, the National Institutes of Health, and the Perpetuation of Scientific Racism. Am J Bioeth. 2017; 17(9):36-47. DOI: 10.1080/15265161.2017.1353165. View

13.

Ayres L, Kavanaugh K, Knafl K . Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003; 13(6):871-83. DOI: 10.1177/1049732303013006008. View

14.

Limdi J, Crampton J . Hereditary haemochromatosis. QJM. 2004; 97(6):315-24. DOI: 10.1093/qjmed/hch065. View

15.

Bonham V, Sellers S, Gallagher T, Frank D, Odunlami A, Price E . Physicians' attitudes toward race, genetics, and clinical medicine. Genet Med. 2009; 11(4):279-86. PMC: 3065019. DOI: 10.1097/GIM.0b013e318195aaf4. View

16.

Hsieh H, Shannon S . Three approaches to qualitative content analysis. Qual Health Res. 2005; 15(9):1277-88. DOI: 10.1177/1049732305276687. View

17.

Wolf S, Burke W, Koenig B . Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide. J Law Med Ethics. 2015; 43(3):486-501. PMC: 4620583. DOI: 10.1111/jlme.12291. View

18.

West K, Blacksher E, Burke W . Genomics, Health Disparities, and Missed Opportunities for the Nation's Research Agenda. JAMA. 2017; 317(18):1831-1832. PMC: 5636000. DOI: 10.1001/jama.2017.3096. View

19.

Carney T, Kong A . Leveraging health informatics to foster a smart systems response to health disparities and health equity challenges. J Biomed Inform. 2017; 68:184-189. PMC: 11407115. DOI: 10.1016/j.jbi.2017.02.011. View

20.

Bonham V, Warshauer-Baker E, Collins F . Race and ethnicity in the genome era: the complexity of the constructs. Am Psychol. 2005; 60(1):9-15. DOI: 10.1037/0003-066X.60.1.9. View