Study Volunteers Wanted: Blacks More Wary but Equally Willing

Newswise — Blacks have more fears, but nearly equal willingness to participate in biomedical research as whites, according to a new study documenting the attitudes of different racial/ethnic groups.

"When we asked in a series of questions: 'Do you see any inherent dangers associated with participating in biomedical research?' the answer for African-Americans was 'yes,'" said epidemiologist and lead study author Ralph Katz.

The analysis reveals that blacks were 1.8 times as likely as whites to express fears associated with participating in a medial research study.

"Given the history of the treatment of African-Americans in our country, it makes sense that blacks would have a heightened awareness of potential dangers," said Katz, of the New York University College of Dentistry, where he is chair of the Department of Epidemiology and Health Promotion.

The new study is published in the current issue of the Journal of Health Care for the Poor and Underserved. Katz's team developed a set of questions to assess how willing a person is to be the subject of a health research. More than 1,100 people in four areas of the United States completed the phone questionnaire.

The work is part of an umbrella project documenting the legacy of the unethical Tuskegee, Ala., experiment that began in the 1930s and intentionally denied treatment to black men with syphilis for decades after penicillin was the accepted cure for the disease.

Historically, black Americans' participation in medical research studies has been proportionally much lower than the rate for whites. Now, the research consortium is exploring a range of issues related to the retention and recruitment of blacks and other minorities in biomedical research.

Cary Gross, associate professor of medicine at Yale University School of Medicine, said the new study lends further support to recent observations that there is not a strong difference between racial groups and willingness to participate in health research — despite the persistent differences in enrollment.

"I think the real issue is access to the studies, access to care. African-American patients are less likely to have health insurance, less likely to be treated at these high-powered academic centers that are doing this research," said Gross. He was not involved in the new study but has published several studies on racial/ethnic differences in health research recruitment.

Gross said the distrust of the health care system certainly plays a role in the lower enrollment of blacks in biomedical research, but he is not convinced that trust accounts for the whole difference. He said investigators should make study participation more accessible.

"Sometimes being in these studies entails extra time and resources, extra trips to the doctors, which translates to extra time away from your job, extra uncertainty about your time schedule. I think for people who are of a lower socioeconomic status, those are additional barriers," Gross said.

Katz said, "Just posting a notice up at the local medical center will not produce the diversity of subjects that we want or that the [National Institutes of Health] demands when they fund studies, or that pharmaceutical houses want in their funded clinical trials."

Katz said willingness to participate in medical research studies is low across all racial/ethnic groups. About 70 percent of all people say they would decline, he said. But in his study, there was no significant difference between whites' and blacks' self-reported willingness to volunteer.

Katz says his findings along with recent results from actual recruitment campaigns suggest "that if you make an overt plan to penetrate the Africa-American community, you will be able to get people to participate."

Journal of Health Care for the Poor and Underserved: Contact Editor Virginia M. Brennan at (615) 327-6819 or [email protected]. Online, visit http://www.press.jhu.edu/journals/journal_of_health_care_for_the_poor_and_underserved/

Katz RV, et al. The Tuskegee Legacy Project: willingness of minorities to participate in biomedical research. Journal of Health Care for the Poor and Underserved 17(4), 2006.