The federal government has longstanding restrictions on research conducted in prisons, and for good reason. Right up until the 1960s and ‘70s, U.S. history is filled with examples of grossly unethical experiments on vulnerable populations within jail walls (and in the case of the infamous Tuskegee experiments, outside of them, too).
But these restrictions may come with an ironic unintended consequence, according to a new analysis from the Yale University School of Medicine. Because so many black men disproportionately wind up in prison and either can’t participate in health research studies or must drop out of them upon incarceration, it’s error by omission: The prison epidemic is so bad that it is affecting health research. Doctors likely don't understand the health problems of black men as well as those of white men.
As a doctor who specializes in treating former prison inmates, Emily Wang, an assistant professor at Yale, had been long aware there was a lack of data about her patients.
What she and her co-authors found surprised even her. None of the 14 major multi-year clinical studies done by the National Heart, Lung, and Blood Institute that she and her co-authors examined had the required approvals to continue to study volunteer participants who were sent to prison. As a result, the Yale team estimates that incarceration accounted for up to 65% of the "loss to follow-up" among black men in these studies (i.e. people dropping out of the study)—a rate far higher than for white men, black women, and white women.
"These are seminal studies looking at racial disparities in health and ... to know that there’s that much possible loss to follow-up due to incarceration is pretty astounding," says Wang. "It really impairs our ability to draw conclusions from these studies."
One study, for example, was designed to look at risks of cardiovascular disease among different populations. "What’s problematic is that black men may have a larger risk for cardiovascular disease. This is the very type of study that was designed to study that risk. When you’re trying to counsel a patient in a clinic about his cardiovascular disease risk, if that patient happens to be a black male, you’re not going to have as good information to tell them."
Wang’s paper, published in May’s issue of Health Affairs, recommends a careful loosening of the restrictions on research on prisoners. For example, individuals involved in long-term epidemiology studies that involve asking survey questions, rather than testing new drugs, might be allowed to continue in the study if they are sentenced to prison.
Importantly, she says former prisoners should be included in the conversations. "The very individuals whose rights we are trying to protect, or trying to protect against abuses, are the ones who we should enable to speak up."