Hostname: page-component-586b7cd67f-2brh9 Total loading time: 0 Render date: 2024-11-22T21:48:52.076Z Has data issue: false hasContentIssue false
  • English
  • Français

Race and Ethnicity in Medical Research: Requirements Meet Reality

Published online by Cambridge University Press:  01 January 2021

Margaret A. Winker
Get access Rights & Permissions [Opens in a new window]

Extract

Race and ethnicity are commonly reported variables in biomedical research, but how they were initially determined is often not described and the rationale for analyzing them is often not provided. JAMA improved the reporting of these factors by implementing a policy and procedure for doing so. However, still lacking are careful consideration of what is actually being measured when race/ethnicity is described, consistent terminology, hypothesis-driven justification for analyzing race/ethnicity, and a consistent and generalizable measurement of socioeconomic status. Furthermore, some studies continue to use race/ethnicity as a proxy for genetics. Research into appropriate measures of race/ethnicity and socioeconomic factors, as well as education of researchers regarding issues of race/ethnicity, is necessary to clarify the meaning of race/ethnicity in the biomedical literature.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 34 , Issue 3 , Fall 2006 , pp. 520 - 525
Copyright
Copyright © American Society of Law, Medicine and Ethics 2006

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

Lawler, A., “Summers's Comments Draw Attention to Gender, Racial Gaps,” Science 207 (2005): 492–93.CrossRefGoogle Scholar
DeParle, J., “Broken Levees, Unbroken Barriers: What Happens to a Race Deferred,” N.Y. Times, September 4, 2005, section 4, p. 1.Google Scholar
Hayes-Bautista, D. E. and Chapa, J., “Latino Terminology: Conceptual Bases for Standardized Terminology,” American Journal of Public Health 77 (1987): 61–68.CrossRefGoogle Scholar
Bhopal, R. S. Phillimore, P. and Kohli, H. S., “Inappropriate Use of the Term ‘Asian’: An Obstacle to Ethnicity and Health Research,” Journal of Public Health 13 (1991): 244–46.Google Scholar
Bhopal, R. and Donaldson, L., “White, European, Western, Caucasian, or What? Inappropriate Labeling in Research in Race, Ethnicity, and Health,” American Journal of Public Health 88 (1998): 1303–07.CrossRefGoogle Scholar
Buescher, P. A. Gizlice, Z. and Jones-Vessey, K. A., “Discrepancies Between Published Data on Racial Classification and Self-Reported Race: Evidence from the 2002 North Carolina Live Birth Records,” Public Health Reports 120, no. 4 (2005): 393–98.CrossRefGoogle Scholar
Jacoby, T., “An End to Counting by Race?” (American Civil Rights Coalition, 2004), available at <http://www.acrc1.org/counting_by_race.htm> (last visited June 12, 2006).Google Scholar
Hunt, S. M. and Bhopal, R., “Self Report in Clinical and Epidemiological Studies with Non-English Speakers: The Challenge of Language and Culture,” Journal of Epidemiology & Community Health 58 (2004): 618–22.CrossRefGoogle Scholar
D'Agostino, R. B. Grundy, S., L. M. Sullivan, and P. Wilson for the CHD Risk Prediction Group, “Validation of the Framingham Coronary Heart Disease Prediction Scores: Results of a Multiple Ethnic Groups Investigation,” JAMA 286 (2001): 180–87.CrossRefGoogle Scholar
NIH Policy on Reporting Race and Ethnicity Data: Subjects in Clinical Research, August 8, 2001, available at <http://grants1.nih.gov/grants/guide/notice-files/NOT-OD-01-053.html> (last visited June 12, 2006).+(last+visited+June+12,+2006).>Google Scholar
Smedley, B. D. Stith, A. Y., and Nelson, A. R., eds., Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Institute of Medicine of the National Academies, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (Washington, DC: National Academies Press, 2003).Google Scholar
Bradley, E. H. Herrin, J. Wang, Y. et al., “Racial and Ethnic Differences in the Time to Acute Reperfusion Therapy for Patients Hospitalized with Acute Myocardial Infarction,” JAMA 292 (2004): 1563–72.CrossRefGoogle Scholar
Bach, P. B. Pham, H. H. Schrag, D. et al., “Primary Care Physicians Who Treat Blacks and Whites,” New England Journal of Medicine 351 (2004): 575–84.CrossRefGoogle Scholar
Armstrong, K. Micco, E. Carney, A. et al., “Racial Differences in the Use of BRCA1/2 Testing Among Women with a Family History of Breast or Ovarian Cancer,” JAMA 293 (2005): 1729–36.CrossRefGoogle Scholar
Roberts, D. E., “The Nature of Blacks' Skepticism about Genetic Testing,” Seton Hall Law Review 27 (1997): 971–979.Google Scholar
Bamshad, M., “Genetic Influences on Health: Does Race Matter?” JAMA 294 (2005): 937–46.CrossRefGoogle Scholar
Id.Google Scholar
BiDil Package Labeling, available at <http://www.nitromed.com/pdf/BiDil%20PI%208.05.pdf> (last visited July 6, 2006).+(last+visited+July+6,+2006).>Google Scholar
Crestor Package Labeling, available at <http://www.astrazeneca-us.com/pi/crestor.pdf> (last visited June 12, 2006).+(last+visited+June+12,+2006).>Google Scholar
Bloche, M. G., “Race-Based Therapeutics,” New England Journal of Medicine 351 (2003): 2035–37.CrossRefGoogle Scholar
Centers for Disease Control and Prevention, “Use of Race and Ethnicity in Public Health Surveillance: Summary of the CDC/ATSDR Workshop,” MMWR 42 (1993) (No. RR-10), available at <http://www.cdc.gov/mmwr/preview/mmwrhtml/00021729.htm> (last visited June 12, 2006).+(last+visited+June+12,+2006).>Google Scholar
McKenzie, K. and Crowcroft, N. S., “Describing Race, Ethnicity, and Culture in Medical Research,” British Medical Journal 312 (1996): 1054.CrossRefGoogle Scholar
International Committee of Medical Journal Editors, Uniform Requirements for Manuscripts Submitted to Biomedical Journals: Writing and Editing for Biomedical Publication (updated November 2003), available at <http://www.icmje.org/#prepare> (last visited June 12, 2006).+(last+visited+June+12,+2006).>Google Scholar
Kaplan, J. B. and Bennett, T., “Use of Race and Ethnicity in Biomedical Publication,” JAMA 289 (2003): 2709–16.CrossRefGoogle Scholar
Rivara, F. P. and Finberg, L., “Use of the Terms Race and Ethnicity,” Archives of Pediatric and Adolescent Medicine 155 (2001): 119.CrossRefGoogle Scholar
Anonymous, “The Unexamined Population,” Nature Genetics 36 (2004): at 53.CrossRefGoogle Scholar
Brahan, D. and Bauchner, H., “Changes in Reporting of Race/Ethnicity, Socioeconomic Status, Gender, and Age over 10 Years,” Pediatrics 115, no. 2 (2005): e163–66.CrossRefGoogle Scholar
Corbie-Smith, G. et al., “Adequacy of Reporting Race/Ethnicity in Clinical Trials in Areas of Health Disparities,” Journal of Clinical Epidemiology 56, no. 5 (2003): 416–20.CrossRefGoogle Scholar
National Institutes of Health Revitalization Act of 1993, I: Subtitle B – Clinical Research Equity Regarding Women and Minorities, available at <http://orwh.od.nih.gov/inclusion/revitalization.pdf> (last visited July 6, 2006).+(last+visited+July+6,+2006).>Google Scholar
Bennett, T. and Bhopal, R., “US Health Journal Editors' Opinions and Policies on Research in Race, Ethnicity, and Health,” Journal of the National Medical Association 90 (1998): 401–08.Google Scholar
Winker, M. A., “Reporting Race and Ethnicity: How and Why?” JAMA 292 (2004): 1612–14.CrossRefGoogle Scholar
National Institute, supra note 29.Google Scholar
Bach, et al., supra note 13.Google Scholar
Duncan, G. J. and Magnuson, K., “Off with Hollingshead: Socioeconomic Resources, Parenting, and Child Development,” in Bornstein, M. and Bradley, R., eds., Socioeconomic Status, Parenting, and Child Development (Mahwah, N.J.: Lawrence Erlbaum, 2003): 93–106.Google Scholar
Id.Google Scholar
Armstrong, et al., supra note 14.Google Scholar
Reyburn, H. Mbatia, R. Drakeley, C. et al., “Association of Transmission Intensity and Age with Clinical Manifestations and Case Fatality of Severe Plasmodium Falciparum Malaria,” JAMA 293 (2005): 1461–70.CrossRefGoogle Scholar
Fialova, D. Topinkova, E. Gambassi, G. et al., “Potentially Inappropriate Medication Use Among Elderly Home Care Patients in Europe,” JAMA 293 (2005): 1348–58.CrossRefGoogle Scholar