Improving prisoner research now: What can IRBs do?
Recruit good prisoner reps, ensure adequate health care, and protect privacy
While IRBS wait to learn the final outcome of the federal government's review of regulations for research involving prisoners, there are steps they can take right now to improve the review of these types of studies, say experts in the field.
One of the most important is to include a true prisoner representative on the IRB, one who not only understands the complexities of prisoner research but who knows the workings of the correctional institution where a study is to be conducted, says Michael Hamden, JD, executive director of North Carolina Prisoner Legal Services and prisoner representative for Research Triangle Institute (RTI) International's IRB in Research Triangle Park, NC.
"It needs to be someone who's familiar with the particular institution, how that institution functions," Hamden says. "That way, there will be somebody who will help the IRB appreciate the implications and overtones of a plan."
Tapping former prisoners
G. David Curry, PhD, a professor of criminology and criminal justice at the University of Missouri in St. Louis, served as a prisoner representative and later as IRB chair on his institution's board. He was recruited for the IRB because his bosses knew he had been imprisoned during the 1980s on a drug charge. He received a full pardon in 2000 from President Clinton.
Curry says he was able to use his experience to help his IRB understand complex issues such as the potential benefit to prisoners of participating in social-behavioral research.
While Curry generally opposes biomedical research involving prisoners, he does believe that social-behavioral studies can be beneficial, to prisoners as a class and to individual prisoners who participate.
"It does relieve boredom, and it helps the prisoner be introspective," Curry says.
He says he also pushed to include means by which prisoners could report adverse effects from studies, which can be difficult in a prison setting.
Curry says that if an IRB is searching for a good prisoner representative, it may be able to find one among the ranks of its own faculty. He says there are many prisoners currently obtaining higher academic degrees, and some have gone into fields such as criminology. A group called Convict Criminologists gathers at the annual meeting of the American Society of Criminology.
"If anybody really wanted to find somebody who's a prisoner advocate, they could probably get the name from that group," Curry says. He also recommends people who have a background in fighting against the death penalty. "They are great prisoner advocates."
Among the IRB's responsibilities in reviewing medical research involving prisoners is to assure that all prisoners at that institution have access to adequate health care, Hamden says.
Without that assurance, the study environment could be inherently coercive, with prisoners opting to participate to get medical treatment they couldn't receive otherwise.
"If the care in an institution is substandard and the prisoner has but one choice to obtain adequate care, then that's not really informed consent," he says. "It is absolute coercion, it's just not ethically appropriate."
The IRB's role should be to require investigators to provide proof of adequate health care at the prison before approving a study, says Wendy Visscher, PhD, director of the Office of Research Protection and Ethics at RTI International.
Privacy protections essential
IRBs also need to pay special attention to the privacy issues raised by prison research, both biomedical and social-behavioral, Hamden says. Research involving prisoners can involve such sensitive subjects as HIV infection, alcohol abuse or incidence of prison rape.
"If a person wants to participate in a research study and the [prison] population knows about the study and the participant is removed from his cell, it can be obvious what's going on and almost impossible to protect privacy in that situation," he says.
However, he says, researchers can limit the amount of information about a study that's known in the general prison population.
"For example, if we're looking at the efficacy of a new HIV treatment, it's not necessary that the prison population know that that is the subject of the study," he says. "But it would be satisfactory and probably would suit everybody to know that there was a study going on of some kind."
He says that in these situations, prisoners need to understand the possible risks of disclosure as part of the informed consent process.
Despite the difficulties involved in conducting prisoner research, Hamden says it's in the best interest of the prisoners and the public at large that studies be conducted, and conducted ethically.
"Although there's a shameful history of exploiting prisoners in medical research, that does not mean that research offers no benefit to prisoners," he says. "There are important potential benefits and they deserve consideration.
"These folks are going to be members of the community again. The correctional officers who supervise them are already members of the community, they return to their families at the end of each shift. To the extent that there's a risk of contagion in a correctional facility, it threatens all of us, whether we're incarcerated or not."