September 24, 2018 / 6:09 PM / in a month

Researchers consider ethics of addressing race in biomedical studies

(Reuters Health) - Three opinion essays in a major medical journal address the ethics of addressing race in biomedical studies.

Race and medical research have a long history together, much of it lamentable, and new genetic discoveries raise new questions about the role race should play in the future, the essays in the Journal of the American Medical Association indicate.

In one essay, Keith Wailoo from Princeton University in New Jersey looks at historical aspects of race and medicine. Focusing on medical discoveries tainted by racism, he reviews the career and aftermath of Dr. J. Marion Sims, once praised as a “father of modern gynecology” for his pathbreaking surgical treatment of vaginal fistulas in women. Dr. Sims developed experimented on black slave women who underwent up to 30 operations over four years without anesthesia. (The anesthetic properties of ether had been discovered but the gas was not widely available).

The attitude at the time was that black bodies were more tolerant of pain and hard labor, and experts of the time invoked or invented biological explanations to explain disease disparities.

These beliefs persisted well into the 1960s as defenders of segregation continued to assert fundamental differences between races. Segregation “fostered the development of separate and unequal hospitals; raising barriers to entry for African Americans into health professions; endorsed the marginalisation of black midwives; and supported white-only state medical societies,” Wailoo wrote.

Old views on race continue to appear, he said. “For instance, two years ago a provocative report was published that noted that medical students and residents at a leading institution held unfounded and deeply mistaken beliefs about blood of black and white patients coagulating at different rates, skin of black patients being thicker than skin of white patients, and African Americans having lower sensitivity to pain. In medicine and society, the ghosts of bygone racism are always present.”

In another essay, Vence L. Bonham and colleagues from National Institutes of Health, Bethesda, Maryland consider how race, ethnicity, and ancestry data are (and should be) used in biomedical research.

“It is time to bring the stakeholders together (including researchers from different disciplines, clinicians, and editorial boards of journals) to build consensus on what we must consider in the use of race and ethnicity in biomedical research and publications,” Bonham told Reuters Health by email.

“Use of race and ethnicity as a surrogate for understanding an individual patient’s genetic background is problematic,” he said. Furthermore, he added, “Patient care must look at the social and environmental background of patients along with their genomic make up to understand influences on health.”

A third essay considers the appropriate - and inappropriate - use of data on race and ancestry in medical journal articles. Researchers need to avoid “simply reinforcing the normative view of race as the great social divide without offering fresh insights or bringing attention to an unrecognized problem,” according to Dr. Richard S. Cooper from Loyola University Medical School, Maywood, Illinois and co-authors.

“Race/racism has . . . negative consequences for broad segments of the population beyond minority or other stigmatized groups,” Cooper told Reuters Health by email. “I think it is necessary to begin to place the everyday outcomes of institutional and personal racism in perspective.”

Racialised thinking and practice, he said, can be used to “divide the opposition or unite one’s followers” while “a variety of progressive reforms (health care, benefits for unemployment, public schools, etc.)” are “ignored or neglected . . . while scapegoating the vulnerable and weak.” Racialised thinking can also be used, he continued, “to create a sub-population required to take low paying jobs, thereby also set a low floor on wages and expectations.”

“The discussion of race as a biological or social construct has become more complicated because of the evolving science of genetics and ancestry,” conclude Executive Editor Dr. Phil B. Fontanarosa and Editor in Chief Dr. Howard Bauchner in a related editorial. “JAMA remains committed to exploring complicated medical, scientific, ethical, legal, political, and social issues in medicine and in medical research.”

SOURCE: bit.ly/2xAX18I, bit.ly/2xAXuI0, bit.ly/2xzaC0A and bit.ly/2xzA8Cy JAMA, online September 24, 2018.

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