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Most Are Wary of Medical Research

Study: Nearly 80 percent of blacks and 52 percent of whites fear being a 'guinea pig'

TUESDAY, Nov. 26, 2002 (HealthDayNews) -- Medical research can help save and extend lives, but a new study finds that many people distrust medical research, the researchers who conduct it, and even their own doctors, who often explain the research and refer them to studies.

And that's especially true for blacks. The study found, overall, they were far more likely to be distrustful than whites.

Not surprising for anyone who knows the story of the Tuskegee (Alabama) Syphilis Study, conducted by the government from 1932 to 1972. Black males in that research study were not given treatment for the sexually transmitted disease syphilis. The fact was covered up, and a formal apology was only just issued in 1997.

In the new study, appearing in the latest issue of Archives of Internal Medicine, Dr. Giselle Corbie-Smith and her colleagues analyzed a telephone survey conducted in 1997 with more than 500 blacks and almost 400 whites, ages 18 and older. The volunteers were asked about their attitude, beliefs and knowledge about clinical research.

Nearly 80 percent of the blacks and 52 percent of the whites polled said they believe they or "people like them" could be used in medical research as "guinea pigs" without their consent. (In fact, research subjects must be briefed on the research and, if they are willing to participate, sign "informed consent" forms.)

Even after the researchers factored in education, income and employment status, the findings of distrust held, says Corbie-Smith, an assistant professor of social medicine and internal medicine at the University of North Carolina.

Nearly 42 percent of the blacks and more than 23 percent of the whites didn't trust their doctors to fully explain research and their participation, and about 15 percent of blacks and 8 percent of whites said they did not feel like they could question their doctors freely.

More than 45 percent of the blacks and nearly 35 percent of whites said they felt their physicians exposed them to unnecessary risks in deciding their treatments.

Corbie-Smith says her team expected distrust among the blacks, in light of history, but the whites' distrust came as a bit of a surprise.

"What is remarkable is the high level of distrust among white Americans," Corbie-Smith says.

The new research yields "startling findings," says Dr. William Cunningham, an associate professor of medicine and public health at the University of California, Los Angeles, who is an expert on minority health care.

But the findings, he adds, jibe with his own recent research. Last year, he published a paper in which his team explored access to health care among Hispanics, blacks and whites. The survey found that a lack of trust in providers actually helped to explain the disparity in access to care among minorities.

The new study, he says, expands on his research in an important way. "It looks directly at trust, and not only in providers but in research and researchers."

Corbie-Smith says that health-care providers and researchers "need to do a better job of demonstrating our trustworthiness."

One way to accomplish that, she says, is to set up a community advisory board when attempting to do community research. For a recent study on barriers to flu vaccines for elderly black people, she did just that and listened to the board's suggestions and input before progressing.

Another key to improvement, Cunningham says, is to improve the relationship between patients and doctors.

"Doctors need to determine what patients fear," he says, and then address their concerns openly and honestly.

What To Do

For more information on clinical trials, visit the National Institutes of Health. For information on the Tuskegee Syphilis Study, click on the University of Virginia.

SOURCES: Giselle Corbie-Smith, M.D., assistant professor of social medicine and internal medicine, University of North Carolina, Chapel Hill; William Cunningham, M.D., associate professor of medicine and public health, University of California, Los Angeles; Nov. 25, 2002, Archives of Internal Medicine
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