Black Americans especially mistrustful of medical research

By DAVID WILLIAMSON

UNC News Services

CHAPEL HILL — If medical scientists sometimes find it hard to recruit enough volunteers — especially blacks — to participate in research studies, there may be a good reason, a new University of North Carolina at Chapel Hill study shows.

A surprisingly high percentage of Americans asked — almost 80 percent of blacks and 52 percent of whites — were suspicious that they might be used as “guinea pigs” without their consent.

The first-of-its-kind study, conducted by a UNC School of Medicine investigator and colleagues, relied on data gathered in 1997 through a national telephone survey of 909 people sponsored by the Institute for Minority Health Research at Emory University. It showed that even after controlling for social and economic factors, whites were not very trusting of doctors, and blacks were even less so.

“Distrust has been proposed as one of the barriers to participation by minorities in research, but until now there haven’t been any studies to show how big that distrust might be or to substantiate racial differences,” said Dr. Giselle Corbie-Smith, assistant professor of social medicine and medicine at UNC. “For that reason, we tapped an existing database to see if there were differences by race and what might account for them.

“We found that in general, both blacks and whites distrusted medicine and medical research, but blacks were significantly more likely to have high levels of distrust,” the UNC physician said. “Those differences didn’t go away when we controlled for factors that might influence them such as income and education.”

A report on the findings appears in Tuesday’s (Nov. 26) issue of the Archives of Internal Medicine, a journal published by the American Medical Association.

Specifically, Corbie-Smith and her colleagues found that 41.7 percent of blacks and 23.4 percent of whites did not trust their doctors to explain research participation fully. Almost 46 percent of blacks and almost 35 percent of whites felt their doctors exposed them to unnecessary risks when deciding on treatment.

More than 37 percent of blacks and nearly 20 percent of whites disagreed that their doctors would not ask them to take part in medical research that might hurt them, she said. Almost two-thirds of blacks and more than a third of whites believed doctors often prescribed drugs as a way of experimenting on people without their knowledge or consent. A quarter of blacks and 8.3 percent of whites thought their physicians already had treated them as part of an experiment without their permission.

The physician called the findings disturbing.

“I think these results should be seen as very disturbing not only for researchers but also for clinicians because often people cannot make the distinction between researchers and their regular doctor,” she said. “All of us in medicine and all of us doing research need to be concerned about showing we’re worthy of people’s trust. If we are trustworthy — and I believe almost all medical researchers are — we need to do a better job of showing it.”

Researchers also need to pay attention how they are interacting with people regardless of race and think about what they are doing to demonstrate they are worthy of people’s trust, Corbie-Smith said. They should not just assume they know what people think since that’s often incorrect. Almost always, ongoing community involvement improves recruiting of subjects.

“For the most part, researchers have their heart in the right place and are trying to help people and do good by the folks who would benefit from their research,” she said. “The message of this research is that as doctors and researchers, we need to pay attention to what these numbers show and do a better job. It’s a wake-up call for the research community.”

Persuading blacks to participate in medical research is important, Corbie-Smith said, because scientists have found some significant differences between races in terms of illness and recovery. Federal and institutional regulations protecting research subjects have improved in recent years, but those alone are inadequate to establish or restore trust.

Distrust of whites in general extends back to slavery, several authors have noted. Distrust of medical research stems from such unethical studies as one conducted in Tuskegee, Ala., in which syphilitic black men were not given the most effective treatment available so that researchers could learn more about the illness’s natural course.

Co-authors of the new paper are Drs. Stephen B. Thomas of the Center for Minority Health at the University of Pittsburgh’s Graduate School of Public Health and Diane Marie M. St. George of the University of North Carolina at Greensboro’s department of public health education. Corbie-Smith, also adjunct assistant professor of biostatistics and epidemiology at the UNC School of Public Health, is the recipient of a Robert Wood Johnson Foundation Minority Medical Faculty Development Program fellowship award.

The National Heart, Lung and Blood Institute, the National Institute of Allergy and Infectious Diseases and the Centers for Disease Control and Prevention supported the work.

The 45-minute telephone survey, which included 527 blacks, posed 42 questions designed to measure attitudes toward medical and public health research and 10 questions about respondents’ social and economic characteristics.