Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-25T20:40:27.089Z Has data issue: false hasContentIssue false

Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules?

Published online by Cambridge University Press:  01 January 2021

Extract

As genetic and genomic research has progressed since the sequencing of the human genome, scientists have continued to struggle to understand the role of genetic and socio-cultural factors in racial and ethnic health disparities. Recognition that race and ethnicity correlate imperfectly with differences in allele frequency, environmental exposures, and significant health outcomes has made framing the relationship between genetic variation, race, ethnicity, and disease one of the most heated debates of the genome era. Because racial and ethnic identities reflect a complicated mix of social and genetic factors, critics have argued that use of racial and ethnic categories as analytical variables in biomedical research lacks rigor, leads to potentially dangerous stereotyping in medical practice, and sends harmful messages of innate racial difference to the broader public.

Concerns over the current lack of diversity in human genetic and genomic studies have developed in parallel to discussions of the appropriate use of racial and ethnic categories during the research process.

Type
Independent
Copyright
Copyright © American Society of Law, Medicine and Ethics 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ramos, E. Rotimi, C., “The A's, G's C's, and T's of Health Disparities,” BMC Medical Genomics 2, no. 29 (2009): 17.CrossRefGoogle Scholar
Agyemang, C. et al., “Negro, Black, Black African, African Caribbean, African American or What? Labeling African Origin Populations in the Health Arena in the 21st Century,” Journal of Epidemiology and Community Health 59, no. 12 (2005): 10141018; Caulfield, T. et al., “Race and Ancestry in Biomedical Research: Exploring the Challenges,” Genome Medicine 1, no. 8 (2009): 8.1–8.8; Cooper, R. S. et al., “Race and Genomics,” New England Journal of Medicine 348, no. 12 (2003): 1166–1170;. Koeing, B. Lee, S. S. J. Richardson, S., eds., Revisiting Race in a Genomic Age (New Brunswick: Rutgers University Press, 2008); Tayo, B. O. et al., “Genetic Background of Patients from a University Medical Center in Manhattan: Implications for Personalized Medicine,” PLoS ONE 6, no. 5 (2011): E19166.CrossRefGoogle Scholar
Braun, L. et al., “Racial Categories in Medical Practice: How Useful Are They?” PLoS Medicine 4, no. 9 (2007): 14231428; Kahn, J., “Genes, Race, and Population: Avoiding a Collision of Categories,” American Journal of Public Health 96, no. 11 (2006): 1965–1970; Shields, A. E. et al., “The Use of Race Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities a Transdisciplinary Perspective,” American Psychologist 60, no. 1 (2005): 77–103.CrossRefGoogle Scholar
Fullerton, S. M. et al., “Population Description and Its Role in the Interpretation of Genetic Association,” Human Genetics 127, no. 5 (2010): 55635572; Gravlee, C. C., “How Race Becomes Biology: Embodiment of Social Inequality,” American Journal of Physical Anthropology 139, no. 1 (2009): 47–57.CrossRefGoogle Scholar
Need, A. C. Goldstein, D., “Next Generation Disparities in Human Genomics: Concerns and Remedies,” Trends in Genetics 25, no. 11 (2009): 489494.CrossRefGoogle Scholar
Gravlee, C. C. et al., “Genetic Ancestry, Social Classification, and Racial Inequalities in Blood Pressure in Southeastern Puerto Rico,” PLoS ONE 4, no. 9 (2009): E6821.CrossRefGoogle Scholar
National Institutes of Health, “NIH Policy and Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research – Amended, October, 2001,” at Section II, Paragraph A; IH Revitalization Act of 1993 (PL 103–43), codified at 42 U.S.C. § 289a-1 (1993), available at <http://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm> (last visited May 11, 2011).+(last+visited+May+11,+2011).>Google Scholar
Extramural research is research supported by NIH through a grant, contract, or cooperative agreement. Intramural research is research conducted in U.S. government laboratories headed by NIH-employed scientists.Google Scholar
“Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity,” Office of Management and Budget, available at <http://www.whitehouse.gov/omb/fedreg_1997standards> (last visited May 17, 2011).+(last+visited+May+17,+2011).>Google Scholar
See National Institutes of Health, supra note 7.Google Scholar
National Institutes of Health, “Inclusion Enrollment Report,” available at <http://grants.nih.gov/grants/funding/phs398/enrollmentreport.pdf> (last visited May 17, 2011).+(last+visited+May+17,+2011).>Google Scholar
Epstein, S., Inclusion: The Politics of Difference in Medical Research (Chicago: University of Chicago Press, 2007).CrossRefGoogle Scholar
See Braun, et al., supra note 3; Hunt, L. M. Megyesi, M. S., “Genes, Race and Research Ethics: Who's Minding the Store?” Journal of Medical Ethics 34, no. 6 (2008): 495500.Google Scholar
See Epstein, , supra note 12; Corbie-Smith, G. et al., “Investigators' Assessment of NIH Mandated Inclusion of Women and Minorities in Research,” Contemporary Clinical Trials 27, no. 6 (2006): 571579; Taylor, H. A., “Inclusion of Women, Minorities and Children in Clinical Trials: Opinions of Research Ethics Board Administrators,” Journal of Empirical Research on Human Research Ethics 4, no. 2 (2009): 65–73; Taylor, H. A., “Implementation of NIH Inclusion Guidelines: Survey of NIH Study Section Members,” Clinical Trials 5, no. 2 (2008): 140–146.Google Scholar
See Hunt, Megyesi, , supra note 13; Hunt, L. M. Megyesi, M. S., “The Ambiguous Meanings of the Racial/Ethnic Categories Routinely Used in Human Genetics Research,” Social Science and Medicine 66, no. 2 (2008): 349361; Corbie-Smith, G. et al., “Conceptualizing Race in Research,” Journal of the National Medical Association 100, no. 10 (2008): 1235–1243; Lee, C., “‘Race’ and ‘Ethnicity’ in Biomedical Research: How Scientists Construct and Explain Differences in Health,” Social Science and Medicine 68, no. 6 (2009): 1183–1190.CrossRefGoogle Scholar
Denzin, N. K. Lincoln, Y. S., The SAGE Handbook of Qualitative Research, 3rd ed. (Thousand Oaks, CA: Sage Publications Inc, 2005).Google Scholar
Haga, S., “Impact of Limited Population Diversity of Genome-Wide Association Studies,” Genetics in Medicine 12, no. 2 (2010): 8184.CrossRefGoogle Scholar
Smart, A. et al., “Social Inclusivity vs. Analytical Acuity? A Qualitative Study of UK Scientists Regarding the Inclusion of Minority Ethnic Groups in Biobanks,” Medical Law International 9, no. 2 (2008): 169190.CrossRefGoogle Scholar
See Braun, et al. and Kahn, , supra note 3.Google Scholar
Ellison, G. T. H. et al., “Racial Categories in Medicine: A Failure of Evidence-Based Practice?” PLoS Medicine 4, no. 9 (2007): 14341436; Outram, S. M. Ellison, G. T. H., “Anthropological Insights into the Use of Race/Ethnicity to Explore Genetic Contributions to Disparities in Health,” Journal of Biosocial Science 38, no. 1 (2006): 83–102; Sankar, P. Cho, M. K., “Genetics: Toward a New Vocabulary of Human Genetic Variation,” Science 298, no. 5597 (2002): 1337–1338.CrossRefGoogle Scholar