My clinical experience in a variety of settings always involved participation and application of clinical research. When I entered the correctional setting in the early 2000’s I was surprised at how closed the specialty was to research. Many departments of corrections have a hard and fast rule – no research involving inmates, no exceptions. With modern safeguards of participant informed consent and Institutional Review Board oversight, this stance seemed unreasonable.
While investigating the history of medical research in prisons for a writing project, I was stunned to find the extent of past abuse of inmates for medical research purposes that did not benefit the inmates involved. It helped me better understand the current chilly climate toward medical research in jails and prisons. The Belmont Report, a 1978 document dealing with human subjects research , sums up the issues nicely by stating “on the one hand, it would seem that the principle of respect for persons requires that prisoners not be deprived of the opportunity to volunteer for research… on the other hand, under prison conditions they may be subtly coerced or unduly influenced to engage in research activities for which they would not otherwise volunteer.”
Human studies research regulation grew from the public awareness and concern over such unethical practices as the Tuskegee Syphilis Study where rural black men were allowed to progress through the stages of syphilis while thinking they were receiving free treatment. During this same time period, prison inmates were lured into participation in medical research by financial reward and hopes of better living conditions or favorable treatment. Most infamous was the Holmesburg Prison medical research performed by doctors from the University of Pennsylvania.
Photo credit: Unknown from NY Times Article Inmates in Holmesburg Prison, Philadelphia participating in skin testing research.
Enticing a vulnerable and underprivileged population, such as prison inmates, to take part in medical research is understandably unethical. The ‘no research in prison’ response to the abuse, however, limits inmate participation in clinical trials that may potentially and directly benefit them. I am thinking, in particular of cancer treatments, which are sometimes still in experimental stages and therefore only available to those who participate in trials.
Should inmates be able to participate in clinical trials which could directly benefit them? I say yes, they should. What do you think?
Photo credit: Marvin Koner from British Medical Journal Article Prisoners line up for skin research