One of the most powerful movies ever to be made about the Holocaust was the 2003 made-for-TV movie, Out of the Ashes, which highlighted the sickening crucible faced by medical professionals held captive in the Third Reich’s torture-and-killing camps.
Medical experimentation on Jewish and Roma (Gypsy) women was one of Dr. Josef Mengele’s favorite forms of entertainment. In the movie, Dr. Gisella Perl (Christine Lahti) faces an ethical crisis when she is forced to comfort a young pregnant Roma woman and then stand by and watch as Mengele, the Angel of Death, marks up and slices open her stomach without the benefit of anesthesia. Mengele’s sadistic detachment as he walks away from the remains of the dead woman and her fetus is agonizingly contrasted with Perl’s helplessness and trauma.
Perl’s story is real. Millions died, and thousands were experimented on (and then usually murdered) in the name of the Nazi “science” of eugenics. And it is because of such treatment that in 1947, the Nuremberg Code spelled out an unequivocal position on the experimentation of people in captivity: The human subject of medical experimentation “should have legal capacity to give consent … [and] should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching or other ulterior form of constraint or coercion.”
Strange thing about this country of ours – we always seem to be able to justify the “legitimate” exceptions to international law and agreements.
From the ’40s through the early ’70s, the United States officially sanctioned the use of prisoners in medical experiments, including the injection of typhoid fever, herpes, malaria, TB and a host of sexually transmitted diseases. In the name of science, doctors have dosed prisoners with LSD, placed them in extreme isolation to develop “mind control” techniques, and, in Washington State between 1963 and 1973, radiated their testicles and then sliced them open. (This last case brought about one of the few successful lawsuits by prisoners against medical experimentation.)
In 1976, things seemed to change for the better. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research released a scathing report that led to new protections of human research subjects. The specific protections for prisoners, in a section known as Subpart C, accompanied similar protections for the disabled, children and other vulnerable populations.
Now, things may be changing again to allow for more medical experimentation on prisoners. In August, the influential Institute of Medicine (IOM), presented a report, “Ethical Considerations for Research Involving Prisoners,” to federal officials that recommended increasing research on prison populations. Such research, the report said, provided a way of “improving the health of prisoners and the conditions in which they live.” In an August 21 editorial, USA Today heartily agreed.
The report also raised valid concerns about consent, safeguards, prisoner privacy and access to adequate health care while in prison. It also called for the expansion of the definition of “prisoners” to include all of the nearly 7 million persons under some form of adult correctional supervision.
The IOM said that “respect for persons and justice should still be the basis for the conduct and regulation of prisoners today.” In reaction, a New York Times editorial two days later observed that: “The country should move slowly on this issue. The savage and dishonorable legacy of drug testing in prison makes it imperative that any change be carried out carefully, with maximum transparency and concern for inmate safety.”
But the United States has already been moving far too slowly on this issue. A 1978 federal regulation stated that prisoners can participate in federally-funded research only if the “experiment poses no more than ‘minimal’ risk,” which it defined as a “risk of physical or psychological harm that is no greater in probability and severity than that ordinarily encountered in the daily lives, or in the routine medical, dental or psychological examinations of healthy persons.” While that would seem to make a certain amount of sense, federal oversight and monitoring of medical experimentation has been incredibly sloppy and disorganized, even according to those who have been responsible for that oversight. “What we’ve got from the regulatory standpoint is a mess,” said Dr. Thomas Puglisi, the former director of compliance for the Office of Protection from Research Risks – now the Office of Human Research Protections (OHRP) – at a medical research summit in March 2001. “I couldn’t say that when I worked for the federal government, but I can say that now.”
And it’s worth noting that the only national oversight is of clinical trials in prisons that receive federal funds. Pharmaceutical companies that want to fund their own studies have no oversight body outside of what a prison or state might deem minimally necessary. A national database of medical experimentation on prisoners does not exist. Research studies don’t even always end up being published – particularly when they fail, sometimes causing serious injury or death to their human subjects.
These are among the most severe obstacles facing journalists who try to find out more about what’s going on, as I discovered while pursuing a January 2002 cover story for In These Times, “The Prison as Laboratory.”
In investigating that story, I found that the number of experimental studies on youth and adults in correctional facilities was increasing. Many of the studies clearly and egregiously violated the existing regulations on “minimal” risk to their subjects, according to FOIA documents I received from the OHRP.
Simply put, medical experimentation on prisoners in the United States never went away. Researchers just got savvier about keeping their prison studies out of the public eye, often turning to pharmaceutical funding, which allows them to experiment with as little notice, oversight or intervention as possible.
Last year, the OHRP Secretary’s Advisory Committee on Human Research Protections (SACHRP) asked its Subpart C subcommittee (addressing prisoner safeguards) to determine whether existing regulations were still “adequate,” as well as to investigate the prevalence of medical testing on prisoners.
In the internal document submitted by that subcommittee to SACHRP, more than 1,000 studies related to prisoners or incarceration came up as “hits” on a PUBMED database search. Of the 79 studies that appeared to be conducted entirely in prison settings, 63 percent had to do with socio-behavioral research revolving around substance abuse, mental illness and disease risk behaviors.
The report noted the lack of real, centralized information on medical testing on prisoners, and added “much of the research in correctional settings is graduate student research of uncertain quality.”
Medical testing in prisons should be brought to a halt – at the very least until quality prison health care for every single inmate is a reality. Genuine preventative and interventionist care for people outside of prison who cannot afford medical insurance should also be a priority.
“Before prisoners can freely make decisions about their medical care and treatment they first must have access to medical care and treatment that meets with community standards,” says Paul Wright, editor of Prison Legal News. “Every day prisoners around the country are dying of medical neglect because they are not provided with simple, known and available medical care. It is laughable to think that somehow cutting-edge medical treatment is suddenly going to be made available to prisoners. The people carrying out the drug testing have a fiduciary duty to enrich their shareholders and employers, not provide the best medical care for prisoners.”
In the current system, prisoners’ lives are already endangered. In light of this country’s legacy of medically abusing captive populations – and to honor the memory, intent and purpose of the creation of the Nuremberg Code – prison experimentation simply needs to come to an end.
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