RE: "FOUR-YEAR REVIEW OF THE USE OF RACE AND ETHNICITY IN EPIDEMIOLOGIC AND PUBLIC HEALTH RESEARCH"

Olivia Carter-Pokras, Claudia R. Baquet and Carolyn F. Poppell

Department of Epidemiology and Preventive Medicine, University of Maryland School of Medicine, Baltimore, MD 21201

Data on race and ethnicity are used by epidemiologists and policy makers to monitor trends over time at the national, state, and local levels; to evaluate programs; to understand the etiologic process and identify points of intervention; and to monitor and enforce laws against discrimination. Extensive evidence exists showing that African Americans and Hispanic Americans (and, to a less well documented extent, American Indians, Alaska Natives, Asian Americans, Native Hawaiians, and other Pacific Islanders) receive less medical care in general and less intensive care than comparable White patients (1).

The timely review by Comstock et al. (2) did not mention important changes in science policy that have had an impact on the use of race and ethnicity in epidemiologic and public health research. Although many of these changes occurred prior to or during the study period (1996–1999), the review did not note funding sources or the time frames of data collection. Given the substantial number of federally funded epidemiologic studies, such information would have permitted an assessment of the extent to which researchers are complying with these requirements.

The Uniform Requirements for Manuscripts Submitted to Biomedical Journals (3) state: "Describe your selection of the observational or experimental participants (patients or laboratory animals, including controls) clearly, including eligibility and exclusion criteria and a description of the source population... When authors use variables such as race or ethnicity, they should define how they measured the variables and justify their relevance." Since the Agency for Healthcare Research and Quality (4), the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (5), and the National Institutes of Health (6) have issued inclusion policies for women and racial and ethnic minorities in externally funded research, it would be expected that investigators whose work is funded by these federal agencies would include a description of their study populations by race and ethnicity in journal articles summarizing their findings.

A standard for collecting and reporting data on race and ethnicity exists for federal agencies, should they choose to collect these data (7). National Institutes of Health extramural grantees are required to collect race/ethnicity data and to follow this standard (8). The Department of Health and Human Services (DHHS) inclusion policy requires the collection of race/ethnicity data for data systems that are funded and maintained by the DHHS (9). Examples of programs whose regulations require the collection and/or reporting of race/ethnicity data include Medicaid managed care and the State Children’s Health Insurance Program (10, 11). The Food and Drug Administration requires drug sponsors to present data on safety and effectiveness by age, race, and sex (12) and has issued draft guidance for collection of race/ethnicity data in clinical trials (13).

It would have been helpful if the review by Comstock et al. (2) had noted whether investigators adjusted for socioeconomic position or social class when evaluating racial and ethnic differences, as is often recommended (1416). The Office of Management and Budget categories for reporting race/ethnicity data (17) are "social-political constructs and should not be interpreted as being scientific or anthropological in nature. They are not to be used as determinants of eligibility for participation in any federal program." Some epidemiologists do not share these views; the Dictionary of Epidemiology states that "useful insights into human biology and genetics derive from analysis by racial group of large data sets such as the census and national health surveys" (18).

Although Comstock et al.’s review (2) covered only articles published during 1996–1999, more recent articles published in the American Journal of Epidemiology still show incomplete treatment of race/ethnicity (e.g., in one study, investigators found higher rates of posttraumatic stress disorder in non-White Gulf War veterans as compared with Whites but did not comment on this (19)). Implementation of the National Research Council’s recommendations on DHHS collection of race/ethnicity data (20) should shed further light on ways in which epidemiologists can improve their use of data on race and ethnicity.

Editor’s note: In accordance with Journal policy, Comstock et al. were asked whether they wanted to respond to this letter, but they chose not to do so.

REFERENCES

  1. Physicians for Human Rights. The right to equal treatment: an action plan to end racial and ethnic disparities in clinical diagnosis and treatment in the United States. Boston, MA: Physicians for Human Rights, 2003. (World Wide Web URL: http://www.phrusa.org/research/domestic/race/race_report/report.html).
  2. Comstock RD, Castillo EM, Lindsay SP. Four-year review of the use of race and ethnicity in epidemiologic and public health research. Am J Epidemiol 2004;159:611–19.[Abstract/Free Full Text]
  3. International Committee of Medical Journal Editors. Selection and description of participants. (Section IV.A.6.a). In: Uniform requirements for manuscripts submitted to biomedical journals: writing and editing for biomedical publication. Updated November 2003. Philadelphia, PA: International Committee of Medical Journal Editors, 2003. (World Wide Web URL: http://www.icmje.org).
  4. Agency for Healthcare Research and Quality. AHRQ policy on the inclusion of priority populations in research. Rockville, MD: Agency for Healthcare Research and Quality, 2003. (World Wide Web URL: http://grants.nih.gov/grants/guide/notice-files/NOT-HS-03-010.html).
  5. Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry. Policy on the inclusion of women and racial and ethnic minorities in externally awarded research. Fed Regist 1995;60(179):47947–51. (World Wide Web URL: http://www.cdc.gov/od/ads/docs/wominext.pdf).[Medline]
  6. Office of Extramural Research, National Institutes of Health. NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research—amended, October, 2001. Bethesda, MD: National Institutes of Health, 2001. (World Wide Web URL: http://grants2.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm).
  7. Office of Management and Budget, Executive Office of the President. Revisions to the standards for the classification of federal data on race and ethnicity. Washington, DC: Office of Management and Budget, 2000. (World Wide Web URL: http://www.census.gov/population/www/socdemo/race/Ombdir15.html).
  8. National Institutes of Health. NIH policy on reporting race and ethnicity data: subjects in clinical research. Bethesda, MD: National Institutes of Health, 2001. (World Wide Web URL: http://grants.nih.gov/grants/guide/notice-files/NOT-OD-01-053.html).
  9. Department of Health and Human Services. HHS policy for improving race and ethnicity data—action. Washington, DC: Department of Health and Human Services, 1997. (World Wide Web URL: http://aspe.hhs.gov/datacncl/inclusn.htm).
  10. Department of Health and Human Services. Medicaid program; Medicaid managed care: new provisions. Final rule. 42 CFR Part 400, et al. Fed Regist 2002;67(115):40989–41116.[Medline]
  11. Health Care Financing Administration. State child health; revisions to the regulations implementing the State Children’s Health Insurance Program. Final rule. 42 CFR Parts 431, 433, et al. Fed Regist 2001;66(122):33809–24.
  12. Food and Drug Administration. Investigational new drug applications and new drug applications—FDA. Final rule. Fed Regist 1998;63(28):6854–62.[Medline]
  13. Food and Drug Administration. Guidance for industry: collection of race and ethnicity data in clinical trials. Rockville, MD: Food and Drug Administration, 2003. (World Wide Web URL: http://www.fda.gov/cder/guidance/5054dft.pdf).
  14. Department of Health and Human Services. Improving the collection and use of racial and ethnic data in HHS. Washington, DC: Department of Health and Human Services, 1999. (World Wide Web URL: http://aspe.hhs.gov/datacncl/racerpt/index. htm).
  15. Zambrana RE, Carter-Pokras O. Health data issues for Hispanics: implications for public health research. J Health Care Poor Underserved 2001;12:20–34.[ISI][Medline]
  16. Kaplan JB, Bennett T. Use of race and ethnicity in biomedical publication. JAMA 2003;289:2709–16.[Abstract/Free Full Text]
  17. Office of Management and Budget, Executive Office of the President. Standards for maintaining, collecting, and presenting federal data on race and ethnicity. Fed Regist 1997;62(210):58782–90. (World Wide Web URL: http://www.whitehouse.gov/omb/inforeg/r&e_app-a-update.pdf).
  18. Last JM, Spasoff RA, Harris SS, et al, eds. A dictionary of epidemiology. 4th ed. New York, NY: Oxford University Press, 2001:150.
  19. Kang HK, Natelson BH, Mahan CM, et al. Post-traumatic stress disorder and chronic fatigue syndrome-like illness among Gulf War veterans: a population-based survey of 30,000 veterans. Am J Epidemiol 2003;157:141–8.[Abstract/Free Full Text]
  20. National Research Council, National Academy of Sciences. Eliminating health disparities: measurement and data needs. Washington, DC: National Academy Press, 2004.




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