When long-hidden information about U.S. syphilis experiments on Guatemalan prisoners in the 1940’s surfaced last week, the shocking case contained echoes of the infamous Tuskegee study. Conducted from 1932 to 1972, the Tuskegee syphilis experiment followed African-American sharecroppers with the disease, and gained notoriety for withholding antibiotic treatment from the men in order to study the disease’s “natural progression.” The damage left by this unethical research persists to this day as an example frequently cited by minority communities distrustful of medical research.
“Most folks in the black community who know very little about research know about the Tuskegee study,” said Rick Kittles, in his Sept. 29 MacLean Center seminar “Race, Biomedical Research, and the Politics of Trust.” “It’s as if it was imprinted in our genes. There’s no Sunday morning breakfast discussion about it, but we know about it. We know something bad happened. We know that we were exploited. It has some serious implications still today.”
Indeed, the shadow of Tuskegee looms large over modern efforts to reduce the growing health disparities in the United States between Caucasian and minority populations, said Kittles, an associate professor at the University of Illinois School of Medicine. Many factors contribute to health gaps on parameters such as obesity, diabetes, and cancer: genes, socioeconomic status, environment, behavioral and cultural practices, and discrimination. But attempts to study any of these factors in the hope of reducing disparities must face the troubled history of research on the undeserved. As researchers find new ways to improve health, from advanced genetic medicine to improving access to fresh food with weekend farmers markets, community involvement is essential for such measures to close the disparity gap instead of further widening the distance between haves and have-nots.
“As this new technology and information is emerging – new treatments and intervention that could hopefully eliminate disparities – if [the community] is not involved, they’re not going to accept it. You have to bring them into the mix,” Kittles said.
The conundrum is particularly difficult for Kittles’ primary research interest: how genetic diversity contributes to disease. Minority populations have traditionally been under-sampled in genetic studies, leading to discoveries that may be applicable to white males of European origin moreso than to other populations of the world. But this imbalance cannot be corrected by merely enrolling more black, Hispanic, or Asian men and women in genetic studies, Kittles proposed. Studies have found that people of African descent are much more genetically diverse than other ethnic groups, and clumping this diverse population together into the broad category of “black” will still fail to address medically-significant differences within that group. The boundaries between races are also nowhere near as concrete as most people believe, he said – “Hispanic” is a population defined by language, not ancestry, and 40 percent of the black men that Kittles’ laboratory show significant amounts of European genetic ancestry in their DNA.
“This historically has been a problem with biomedical research,” Kittles said. “When you use race as a proxy, it doesn’t allow you to tease apart the biological and environmental risk factors.”
Those arguments ran parallel with the views expressed by Bruce Lahn, professor of human genetics, in his Nature editorial last year advocating for genetic diversity research. The technology and resources to make such individualized analysis of genetic variation possible may still be in the future, but the cost of genotyping is falling rapidly. For that new world of genetic medicine, Kittles provided double-edged advice: genetic research will not reach its future potential until it goes beyond race, but the tragically entwined history of race and medical ethics cannot be forgotten.
[Each academic year, the MacLean Center for Clinical Medical Ethics organizes a series of lunchtime seminars by physicians, biologists, economists, social scientists and other experts covering the biggest questions in health care and ethics. This year’s theme is “Health Disparities: Local, National, Global,” and the series was put together with the Urban Health Initiative, the Global Health Initiative, and Finding Answers. ScienceLife will carry regular coverage of this unique series, often accompanied by video of the lectures provided by the MacLean Center.]