Minorities wary of vague clinical trials

A study shows patients' trust increases when personal physicians are involved and details are given.

By Kevin B. O'Reilly, AMNews staff. Nov. 20, 2006.

Blacks and Hispanics are 80% more likely than whites to fear participating in biomedical research, a new study shows. That disparity disappeared, however, when respondents were asked about their willingness to take part in particular study activities such as giving blood or taking medications.

The November Journal of Health Care for the Poor and Underserved features results of a 60-question survey of 900 adults in four U.S. cities aimed at measuring the legacy of the U.S. Public Health Service Syphilis Study at Tuskegee. In the notorious study that took place between 1932 and 1972, 400 black Alabama sharecroppers with syphilis were denied medical treatment so researchers could observe the disease's long-term course.

Minority participation in biomedical research studies has long trailed that of whites, despite a 1993 federal law mandating inclusion of women and minorities in clinical trials sponsored by the National Institutes of Health. Many researchers have speculated that the Tuskegee tragedy played some role in discouraging minority participation, but that view "wasn't an intellectual realization," according to Ralph V. Katz, DMD, PhD, MPH, lead author of the study. "It was an emotional assumption."

To better understand attitudinal differences of blacks, whites and Hispanics, Dr. Katz and his co-authors crafted two sets of questions. First, the "guinea pig fear factor" scale asked respondents about how likely it was that privacy concerns, finances, mistrust, fear of contracting AIDS or fear of being a "guinea pig" would interfere with their taking part in a medical study. On this scale, both blacks and Hispanics were 80% more likely to say such concerns would give them pause.