Article: Change common rule to increase minority voices in research
An article to be published in the American Journal of Public Health recommends changing the federal regulations that govern research oversight to address continued underrepresentation of minorities in research studies.
Co-written by Bill Rencher, health access program director of the consumer advocacy nonprofit Georgia Watch, and Leslie Wolf, Georgia State University professor of law, the article, Redressing Past Wrongs: Changing the Common Rule to Increase Minority Voices in Research, is part of a special issue on the ethics of human subjects research in minority populations.
The article responds to the underrepresentation of African-Americans and other minorities in research, an important public health problem because numerous diseases and health conditions, regardless of income, age or gender, disproportionately affect these populations. Without adequate representation of minority populations in research, these health disparities likely will persist.
There are many reasons for the underrepresentation of minorities in research. Many point to the Tuskegee study in which the U.S. government followed hundreds of poor, rural African-American men with untreated syphilis for 40 years as a cause of mistrust in research.
However, "the history of medical and research abuses dates to slavery," said Rencher. "African-Americans may be disinclined to participate because of long-standing suspicion with the medical establishment." They also may lack access to care, which means they are not asked to participate in the first place, and they may see few minority physicians or researchers.
"We recommend treating minorities as a vulnerable population for regulatory purposes, as is done for children, prisoners and pregnant women, to focus the attention of those overseeing the studies," said Wolf. “We continue to have problematic studies involving minority populations. Our hope is that creating special regulatory provisions will focus attention in ways that eliminate these problematic studies.”
The article also suggests greater community consultation and increasing minority representation on Institutional Review Boards, organizations charged with reviewing research studies, to better provide greater minority input into the research oversight system.
Rencher and Wolf hope more attention to the concerns of communities affected will facilitate research that can find solutions to the health inequities that persist in the U.S.
"The changes we're recommending alone are not going to solve the problem. There need to be other structural changes, such as more minority researchers and physicians. But we hope our article gets the conversation started," said Rencher.