Allen M. Hornblum
is an assistant professor of geography and urban studies at Temple University
Osagie K. Obasogie
directs the project on bioethics, law and society
at the Center for Genetics
and Society in Oakland, Calif.
Any day now the U.S. Department of Health & Human Services may decide to turn back the clock to a time when doctors went unchallenged, medical investigators could do no wrong, and vulnerable people were grist for the research mill.
Last summer, the Institute of Medicine (IOM) released a controversial report recommending the return of federally funded medical research to our nation's prisons. Propelled by historical amnesia and corporate greed, a resurgence of such research may do much harm.
Although Tuskegee (black sharecroppers), Fernald (orphans), and Willowbrook (retarded children) are infamous examples of how medical researchers exploited vulnerable populations, prisoners were scientists' guinea pigs of choice during the 20th century.
Prisoners across the country were routinely incorporated into dangerous medical experiments that were unthinkable for other populations: testicular transplants and radiation studies, injections of live cancer cells, dioxin slatherings, and exposure to psychotropic chemicals and mind-control agents. University of Pennsylvania researchers set up labs inside Holmesburg Prison for easy access.
Commercial interests, the military and the CIA were behind many of these dubious initiatives. It wasn't until the late 1970s that policymakers curbed these brutal practices.
The IOM now thinks that new "guidelines," institutional "transparency" and increased "monitoring" would safeguard today's prisoners from past transgressions. Such views are wildly optimistic.
Prisons are unusual institutions. Oppressive, paramilitary and sequestered from society, they are the reason the Nuremberg Code's first principle precludes those in "constrained" and "coercive" environments from participating in medical research.
Perhaps even more troubling than the recommendation itself is how the IOM came to it.
First, and most shocking, the IOM admits to having visited only one prison during its two-year investigation. How is it possible to make sound policy decisions without taking a thorough look at the conditions faced by those most affected? By failing to acknowledge that nearly every aspect of prisoners' daily lives - from when to eat to when to sleep - is imposed at the barrel of a gun, the IOM committee makes a mockery of informed consent, medical research's foundational principle.
Second, the committee based its decision on a review of articles about trends in ethics since the late 1970s, when current restrictions on research with prisoners were put in place. But decisions of such consequence cannot be based solely on changes in the academic wind. What also needs to be considered is whether the appalling conditions giving rise to the current protections have been eliminated. And all evidence suggests that they have only gotten worse.
Last, the committee isolates its inquiries from other moral commitments relevant to prisoners' well being - namely, human rights. Vesting internationally agreed upon human rights in every person and creating ethical standards for medical research are two sides of the same coin. But with the wide-ranging human-rights violations in today's prisons - including sexual assault and decrepit living conditions - attempts to isolate medical research from human-rights standards can lead one ethical norm to undermine the other, exposing prisoners to even greater abuse.
Bioethical dilemmas involving prisoners will be with us for some time. South Carolina, for example, is considering a proposal to relieve its shortage of kidneys for transplant by shaving 180 days off inmates' sentences if they agree to become donors.
Human biotechnology also might come into play; given the shortage of eggs available to pursue certain types of stem-cell research, it's not difficult to imagine similar incentives being offered to incarcerated women to become egg donors.
These are complicated issues with remarkably high stakes. Medical research with human subjects can retain its legitimacy only if it recognizes its deep kinship with human rights. Regrettably, the impending Health and Human Services decision to loosen restrictions on prison research leads us in the wrong direction.