Minorities Volunteer for Medical Research as Often as Whites, Study Finds
Minorities volunteer for medical experiments at least as often as whites do, despite a widely held belief that they are more reluctant to do so, according to an analysis of 20 studies published online on Monday in PLoS Medicine, the Washington Post reports.
For the analysis, NIH researchers and colleagues examined published health studies dating back more than 20 years and analyzed data from 20 studies that reported consent rates by race and ethnicity. The analysis, which looked at enrollment data for more than 70,000 individuals, found that for the three simplest studies requesting personal medical information, consent rates were about 80% for blacks, Hispanics and non-Hispanic whites.
For the 10 studies testing new medicines, consent rates were about 45% for blacks and non-Hispanic whites and about 55% for Hispanics. For seven surgical studies, consent rates were about 55% for whites and minorities.
Several past studies have indicated that minorities, blacks in particular, are distrustful of medical institutions. Such attitudes "have long been attributed ... to lingering resentment over the experiments" at Alabama's Tuskegee Institute, in which doctors withheld medical treatment from about 400 black men with syphilis as part of a federal study, according to the Post.
However, the new analysis suggests that "although minorities are indeed underrepresented in research, the reason appears to be that doctors and scientists reach out to them less," the Post reports.
NIH bioethicist Ezekiel Emanuel, a researcher on the study, said, "You have to stop blaming the victim here. When you see it's about access -- not bringing enough minorities in -- that means the responsibility is on us, the researchers and research institutions."
William Lawson, chair of psychiatry at Howard University, said, "African Americans are quite willing to participate once barriers are removed," adding, "Access, more than attitude, is the major factor."
Vanessa Northington Gamble, director of the Tuskegee University National Center for Bioethics, said, "This study shows that once you get African Americans to the place and educate them and ask their consent, they consent at the same rates as non-African Americans." She added, "We need to figure out what it takes to get these people into the system and to that interview."
Troy Duster, a sociologist at New York University, said higher rates of several chronic diseases among blacks may contribute to their willingness to participate in research and contribute to medical knowledge, despite the incidents at Tuskegee, adding that some blacks might see medical studies as an opportunity to get high-quality care (Weiss, Washington Post, 12/6).
The study is available online.
NPR's "Morning Edition" on Tuesday reported on the study. The segment includes comments from:
- Gamble; and
- Rebeca Ramos, technical director for the United States-Mexico Border Health Association (Jones, "Morning Edition," NPR, 12/6).