Mistrust of doctors widespread across the USA

By Kathleen Fackelmann, USA TODAY

Nearly 80% of blacks and 52% of whites believe they could be used as "guinea pigs" for medical research, shows a survey out Tuesday.

The findings reflect a deep reservoir of mistrust that cuts across racial lines, says study author Giselle Corbie-Smith at the University of North Carolina-Chapel Hill.

Such fear could hamper the nation's ability to carry out crucial research on heart disease, cancer and other diseases that afflict millions of Americans, says Jordan Cohen, president of the Association of American Medical Colleges in Washington, D.C. He was not connected with the study.

The researchers surveyed more than 500 blacks and 400 whites, randomly selected from all over the USA.

Despite increasing attention to regulations aimed at protecting human subjects, many people still said they worried about being subjected to an experiment without their consent. The study, published in the Archives of Internal Medicine, revealed that:

• Nearly 42% of blacks and more than 23% of whites did not trust their doctor to fully explain research participation to them.
• More than 37% of blacks and nearly 20% of whites thought their doctor might ask them to join a research study — even if that meant they might suffer some harm from an experimental drug or treatment.
• About 15% of blacks and 8% of whites did not feel they could freely question their doctors.

The findings held true even when the researchers accounted for education level and income, two factors that might affect trust, Corbie-Smith says.

Many African Americans say they distrust the medical system for good reason: They remember the 1932-1972 Tuskegee study in which researchers denied treatment to nearly 400 black men with syphilis to see how the disease progressed.

More recently, the highly publicized case of Jesse Gelsinger, an 18-year-old with a rare genetic disease, raised questions about the safety of clinical trials. Gelsinger died after receiving a highly experimental gene therapy at the University of Pennsylvania in 1999. Critics say the researchers didn't fully understand the risks of that treatment before starting a human trial.

Cohen says cases like Gelsinger's are few and far between. The vast majority of medical researchers put patient safety above all else, he says.

Other experts blame the commercialization of medicine for the trust problems. LaVera Crawley, an ethics researcher at Stanford University, says blacks and whites alike worry that a doctor pushing a research agenda may have a financial stake in the outcome.