Despite many breakthroughs in medicine, health outcomes for African Americans continue to be disproportionately bleak. Blacks experience higher incidences of certain diseases such as diabetes and hypertension and have higher mortality rates from stroke, heart attack, breast cancer and some other maladies, data shows.
The lack of African-American participation in clinical trials, where valuable research is conducted that can cut down on the incidences of certain diseases and save lives, may be contributing to the higher mortality rate, experts said.
“In the United States, we are the world leaders in understanding the mechanisms of diseases and understanding how to prevent diseases before they start,” said Dr. Stephen Thomas, director of the University of Maryland Center for Health Equity and one of the nation’s leading scholars in the effort to eliminate racial and ethnic health disparities. “But, while the overall life span of Americans has improved over time, that improvement has not applied to everyone. Blacks and Latinos have been left out.”
A big part of the problem is the paucity of minority participation in clinical trials and research, health advocates said.
“Clinical trials are important because that’s where we collect information and knowledge and test treatments for diseases that trouble us,” said Dr. Celia J. Maxwell, associate professor of medicine and associate dean for research at Howard University College of Medicine.
Studies on many drugs have not involved minorities, however, which poses a problem since people from different ethnic and racial backgrounds may respond to medicines differently, Maxwell added.
In part, African Americans do not participate in clinical trials because of an inherent mistrust of the scientific community, birthed by atrocities such as the Tuskegee syphilis trial, a non-therapeutic study that ran from 1932-1972, and state-run eugenics programs, which involuntarily sterilized thousands of Black women.
“The history of racism in medicine and public health would be easy to ignore if it were not so well-documented. African Americans were used as guinea pigs not while they were alive, but also when they were dead,” said Thomas. He was one of the principal investigators of the National Institutes of Health’s 2009 National Bioethics Infrastructure Initiative: Building Trust Between Minorities and Researchers and is the editor of the latest edition of the American Journal of Public Health, which focuses on the subject of minorities in clinical trials.
“Our ancestors warned us to be wary of hospitals and researchers,” he added. “…Deep within the cultural memory of Black people, in particular, the ways in which we were abused.”
Even among those who are too young to remember such abuses, the mistrust is present because the researchers do not look like them or come from dissimilar socioeconomic stratum, Maxwell said.
But fear is not the only factor, many agree.
Socioeconomics may play a role. For example, Black parents may not be able to afford the childcare or transportation costs necessary to commit to a clinical trial, Maxwell said.
And information is also key. Patricia Sanders is the director of 50 Hoops, a nonprofit and parent organization of the Coalition to Eliminate Disparities and to Research Inclusion in Clinical Trials (CEDRICT) project. Since 2009, Sanders and her team of volunteers have visited about 20 cities and spoken to about 50,000 African Americans to discuss their health needs and their views on clinical trials.
“Over the years our data has begun to show us that, for African Americans, it is not so much that we are afraid, but the biggest reason is lack of access and information,” she said. “There are so many things people don’t know about clinical trials.”
Through a variety of means—including text message alerts, dinners and meetings, Sanders has worked to educate African Americans about their diseases and clinical trials. She said 92 percent of CEDRICT’s participants, after they have been educated, said they would be more willing to participate in a clinical trial.
Thomas reported a similar finding, saying many African Americans and Latinos say they are willing to participate in research, but have never been asked.
Researchers, most of whom are White, make assumptions about the willingness or ability of Blacks to participate and they take the easy way out, he said. But, with the Obama administration putting more teeth behind diversity requirements, investigators will be forced to include minorities.
“Now, if you write a grant request to the NIH you are required to include women and minorities, two groups that were formerly excluded,” Thomas said.
The media can play a role in increasing minority involvement, advocates said.
Dr. Luana Colloca, principal investigator on a new clinical trial that is investigating the mechanism of pain using brain mapping, said that for the first time, African-American participants were solicited through advertising.
“We didn’t want to collect information from just one group of people or the results would be unbalanced. Pain affects everyone,” said Colloca, a staff member at NIH’s National Center for Complementary and Alternative Medicine and Department of Bioethics.
Researchers also need to become more in tune with their intended subjects, advocates said.
“Reaching racial and ethnic minorities must be done in a way that is respectful, culturally appropriate and built on a basis of trust trust begins with honesty,” said Thomas.
More importantly, he added, researchers cannot be simply concerned with collecting data. They must be prepared to address the real needs of the community.
“We’re not just going to line people up to take part in studies,” Thomas said. “Black people have been poked and prodded and they’re still sick. We have to have a commitment to improving the health of African Americans.
“It is an issue of justice,” he added, “and it is an issue of bioethics, which argues that those who bear the burden of research must benefit from it.”