Using Race in Medicine? Seven Guidelines for Doing so Responsibly
Though the legitimacy of race as a biological concept has been largely discredited, racial categories (often as crude proxies for genetic differences between populations) are currently ubiquitous in medicine and medical research. Drugs are marketed to particular racial communities; researchers describe varying effects of a drug in different races; in some cases severity of diseases are even measured differently for different races. How are these categories determined? Is there uniformity from one study to another? Is it ever ethical to use these categories to address health disparities, or does it only increase discrimination and further misinterpretations about racial difference?
Though these questions have extremely critical impacts on the way that race is used in medicine, and the way people receive healthcare, they do not seem to have much traction within the medical field. All too often, race is used as though it were an unproblematic, static, and scientific fact of life. In many cases, researchers do not explain how people come to be categorized the way that they are, or even the reason for separating people out by race. When they find differences between the categories they have made, all too often they are not careful to disentangle social conditions from biological conclusions.
Scientific American blogger Ilana Yurkiewicz, a student at Harvard medical school, argues that “while sensitive consideration of race may sometimes be justified, the burden is on the medical researcher to explain why that is.” Given the lack of uniformity and appropriate consideration, guidelines for the medical community are clearly needed. Yurkiewicz’s most recent blog draws attention to seven guidelines that were proposed by Judith B. Kaplan and Trude Bennett in a 2003 paper in JAMA (protected by a paywall). Here are their conclusions, as Yurkiewicz cites them:
“1. When race/ethnicity is used as a study variable, the reason for its use should be specified.
2. In citing race/ethnicity data from any source, authors should describe the way in which individuals were assigned to racial/ethnic categories. If racial/ ethnic identification was self-reported, authors should specify whether individuals answered an open-ended question or chose from a fixed set of categories.
3. Race/ethnicity should not be used as a proxy for genetic variation. Statements about genetic differences should be supported by evidence from gene studies. Genetic hypotheses should be firmly grounded in existing evidence, clearly stated, and rigorously tested.
4. In stating hypotheses and describing study results, authors should distinguish between race/ethnicity as a risk factor and race/ethnicity as a risk marker.
5. In the interpretation of racial/ethnic differences, all conceptually relevant factors should be considered, including racism and discrimination, [socioeconomic status] SES, social class, personal or family wealth, environmental exposures, insurance status, age, diet and nutrition, health beliefs and practices, educational level language spoken, religion, tribal affiliation, country of birth parents’ country of birth, length of time in the country of residence and place of residence.
6. Because lack of adjustment for [socioeconomic status] SES or social class is the most important potential source of bias in studies of racial/ethnic differences, researchers should make every effort to adjust for conceptually relevant measures of SES or social class when comparing racial/ethnic groups. Unadjusted findings should be clearly labeled as such, and in general they should be reported in conjunction with adjusted findings for comparison purposes.
7. In describing racial/ethnic groups, authors should use terminology that is not stigmatizing, does not reflect unscientific classification systems, and does not imply that race/ethnicity is an inherent, immutable attribute of an individual.”
“The bottom line?,” asks Yurkiewicz. “Be comprehensive; be as precise as possible; be respectful. I applaud and thank the authors for these guidelines. The ultimate goal of medical research is to help patients. In the discussion over whether there is a place for race in doing so, it would help all sides to make their cases with such care.”
Previously on Biopolitical Times: