Even as doctors and judges in Europe were developing the Nuremberg Code in response to Nazi doctors’ human experiments, U.S. medical researchers were intentionally infecting non-consenting Guatemalans with potentially deadly diseases.
On Friday, President Obama, Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius apologized for medical experiments the American government performed on Guatemalan prisoners and mentally ill patients from 1946 to 1948. A team of U.S. government researchers deliberately infected nearly 700 Guatemalan men with syphilis and gonorrhea as an experiment to see whether penicillin acted as an innoculant, as well as a cure (the Boston Globe reports over 1,500 were infected, BBC News and the New York Times say almost 700 — The Guardian reports that 696 were included). None of the subjects consented to the study.
The experiment was unearthed by Wellesley College professor Susan Reverby. Professor Reverby made her discovery while doing research for a book on the infamous Tuskegee experiments, in which doctors deliberately withheld treatment from 399 poor African-American men with syphilis for forty years in order to observe the progress of the disease. (Untreated syphilis can lead to heart failure, damaged bones, blindness, insanity, and death.) This 1932 to 1972 study involved numerous doctors, including John C. Cutler — the same man who oversaw the experiments in Guatemala.
As Professor Reverby describes on NPR, the Guatemalan experiments differ from the Tuskegee study. Unlike in Tuskegee, the Guatemalan subjects were actively infected with the disease, first through conjugal visits with an infected prostitute, and later through a concoction being poured onto skin abrasions the doctors made on the patients’ arms, faces and penises. Also unlike Tuskegee, the patients were treated for their infections — the point of the experiment was not to see the diseases progress, but to see if penicillin could inoculate patients against infection. However, it is unclear if all the Guatemalans were successfully treated and made full recoveries.
The experiments have an important similarity beyond the common disease and absolute lack of informed consent, though — in them, U.S. government scientists deliberately used vulnerable human populations who were unlikely to insight interest or intervention by other members of the general public. In Tuskegee, this meant poor black sharecroppers in Alabama. In Guatemala, it meant prisoners and people with mental illnesses who were from another country and didn’t speak English.
Actions Speak Louder Than Words
Upon learning of these experiments, President Obama personally called the Guatemalan President Alvaro Colom to apologize and to assure him these experiments “ran contrary to American values.” Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius publicly apologized to Guatemala and those affected by the research. They called the experiments “clearly unethical” and “abhorrent” and expressed their deep regret. In addition, the U.S. government has asked the independent agency, the Institute of Medicine, to investigate the study.
President Colom called the experiments “a crime against humanity.” The Guatemalan government is planning to examine the role and culpability of their own officials, who Reverby says gave American researchers permission to experiment.
White House spokesman Robert Gibbs said the experiments were “shocking, it’s tragic, it’s reprehensible.” Unfortunately, though these revelations are indeed tragic and reprehensible, they aren’t particularly shocking. The United States government, American doctors, and American drug companies have a long, sordid history of carrying out medical experiments on unwilling subjects. The Tuskegee experiments are the most well-known example, but they are hardly the only one.
For instance, in the 1950s, 60s and 70s doctors from the University of Pennsylvania performed multiple experiments on prisoners at the Holmesberg State Prison, including injecting them with Agent Orange toxins. These experiments, which were done on behalf of chemical companies and the U.S. Army, left prisoners with lasting damage to their skin, immune systems, and psyches.
Over the course of 15 years at Staten Island’s Willowbrook State School, which housed mentally disabled children, New York University researchers infected hundreds of mentally disabled children with hepatitis (pdf) in order to gauge how well injected gamma globulin antibodies protected the children from infection. (The researchers did get parents’ permission, though I’d argue parents shouldn’t be allowed to agree to infecting their child with a painful illness unless it is somehow essential for the child’s well-being.)
Just this summer, Physicians for Human Rights accused the CIA of carrying out medical experiments on detainees in order to perfect torture methods.
And as the Washington Post points out, the revelation of these experiments in Guatemala comes at a time “U.S. drug companies are increasingly going to poor, less-educated countries to test new drugs and other therapies.”
Many news reports reassure us that this kind of thing could never happen again. In the wake of the Tuskegee experiments coming to light, in 1974 Senator Ted Kennedy strengthened regulation over tests involving human subjects. As the medical community is quick to point out, we have safeguards in place that should prevent the kinds of abuse Guatemalans suffered in the 40s.
Doctors are right to be concerned about rebuilding trust in the system. The revelation of the Tuskegee experiments has had long-term negative effects on the trust many placed in the medical establishment. African-American men, for instance, are notoriously leery of participating in medical research or even believing doctors instructions. And why not? After all, why would anyone trust an institution so callous and so racist that they watched people like them become blind and insane and die as an easily-killed-by-antibiotics infection ravaged their brains… just because the researchers were interested in what would happen?
Yet without trust, the medical establishment cannot run well-regulated honest clinical trials, treat diseases, or even promote preventative care — so while its easy to see why many fear them, doctors and researchers are understandably anxious to reassure all of us that these experiments were aberrations never to be repeated.
It is important these experiments were brought to light, and not only because I think it’s important to know and acknowledge the truth. These stories will also turn the public eye on the dangers that arise when the medical and drug industries are not strictly regulated and vigorously investigated. Reassurance and apologies aren’t enough. We need to see evidence to ensure overseas experiments are being thoroughly vetted (let’s avoid a The Constant Gardener scenario, shall we?), and we need to know medical schools and labs are explicitly training their doctors and researchers to respect the consent of their subjects even if their subjects are poor, or black, female, or don’t speak English, or are in prison, or are mentally ill. We need to keep the spotlight on the government, the health care industries, and the drug companies — and they need to win back our trust inch by painful inch. Abject apologies are a step, and regulations that are currently in place are far superior to the shoddy oversight of the 40s, but these laws and words need to be backed up with transparency and action.
Photo of Guatemalan women at a market by Librex, licensed for reuse through Creative Commons.