Tuesday, September 6, 2011

Panel Hears Grim Details of Venereal Disease Tests

Panel Hears Grim Details of Venereal Disease Tests

August 30, 2011

Gruesome details of American-run venereal disease experiments on Guatemalan prisoners, soldiers and mental patients in the years after World War II were revealed this week during hearings before a White House bioethics panel investigating the study’s sordid history.

From 1946 to 1948, American taxpayers, through the Public Health Service, paid for syphilis-infected Guatemalan prostitutes to have sex with prisoners. When some of the men failed to become infected through sex, the bacteria were poured into scrapes made on the penises or faces, or even injected by spinal puncture.

About 5,500 Guatemalans were enrolled, about 1,300 of whom were deliberately infected with syphilis, gonorrhea or chancroid. At least 83 died, but it was not clear if the experiments killed them. About 700 were treated with antibiotics, records showed; it was not clear if some were never treated.

The stated aim of the study was to see if penicillin could prevent infection after exposure. But the study’s leaders changed explanations several times.

“This was a very dark chapter in the history of medical research sponsored by the U.S. government,” Amy Gutmann, the chairwoman of the bioethics panel and the president of the University of Pennsylvania, said in an interview.

President Obama apologized to President Álvaro Colom of Guatemala for the experiments last year, after they were discovered.

Since then, the panel, the Presidential Commission for the Study of Bioethical Issues, has studied 125,000 pages of documents and has sent investigators to Guatemala. While the panel will not make its final report until next month, details emerged in hearings on Monday and Tuesday.

The most offensive case, said John Arras, a bioethicist at the University of Virginia and a panelist, was that of a mental patient named Berta.

She was first deliberately infected with syphilis and, months later, given penicillin. After that, Dr. John C. Cutler of the Public Health Service, who led the experiments, described her as so unwell that she “appeared she was going to die.” Nonetheless, he inserted pus from a male gonorrhea victim into her eyes, urethra and rectum. Four days later, infected in both eyes and bleeding from the urethra, she died.

“I really do believe that a very rigorous judgment of moral blame can be lodged against some of these people,” Dr. Arras said.

Also, several epileptic women at a Guatemalan home for the insane were injected with syphilis below the base of their skull. One was left paralyzed for two months by meningitis.

Dr. Cutler said he was testing a theory that the injections could cure epilepsy.

Poor, handicapped or imprisoned Guatemalans were chosen because they were “available and powerless,” said Anita L. Allen, a bioethicist at the University of Pennsylvania’s law school and a panelist.

The panel’s hearings also brought to light that a local doctor had invited the American researchers, and that Guatemalan military and health officials had initially approved the work. In 1947, an international conference on venereal diseases — based on the experiments — was held in Guatemala City, according to Dr. Rafael Espada, the vice president of Guatemala, in remarks quoted by the Guatemalan news media.

Dr. Espada, a physician, is leading his country’s inquiry into the matter and is expected to deliver his report in October. On Monday, he told Guatemalan reporters that five survivors, all in their 80s, had been found and would receive medical tests.

Dr. Cutler’s team took pains to keep its activities hidden from what one of the researchers described as “goody organizations that might raise a lot of smoke.”

Members of the bioethics commission recalled Nazi experiments on Jews and said that Dr. Cutler, who died in 2003, must have known from the Nuremberg doctors’ trials under way by 1946 that his work was unethical.

Also, according to Dr. Gutmann, Dr. Cutler had read a brief article in The New York Times on April 27, 1947, about other syphilis researchers — one of them from his own agency — doing tests like his on rabbits. The article stated that it was “ethically impossible” for scientists to “shoot living syphilis germs into human bodies.” His response, Dr. Gutmann said, was to order stricter secrecy about his work.

Also, one commission member added, “Regardless what you think of the ethical issues, it was just bad science.”

The results were never published in medical journals, note-keeping was “haphazard at best” and routine protocols were not done.

The Guatemala experiments came to light only last year when a medical historian found descriptive notes in the archives of the University of Pittsburgh. The historian, Susan M. Reverby of Wellesley College, was researching the infamous Tuskegee study, in which Alabama sharecroppers infected with syphilis were left untreated from 1932 to 1972. Dr. Cutler oversaw the Tuskegee study after his Guatemala work finished; he was also an acting dean at the University of Pittsburgh in the 1960s.

Dr. Cutler sent his Guatemala reports to only one supervisor, but Dr. Gutmann said they went up the chain to Surgeon General Thomas Parran Jr., a favorite of President Franklin D. Roosevelt. According to a government biography, Dr. Parran was famous for his long campaign against syphilis, which was then a major public health problem but could not even be mentioned on the radio.

In 1943, Dr. Cutler’s team had tried to infect 241 inmates of a federal prison in Terre Haute, Ind., with gonorrhea. But that time they adhered to ethical protocols, using only volunteers, explaining the risks and offering cash or help getting reduced sentences in return for participating.

Dr. Nelson L. Michael, an AIDS researcher at the Walter Reed Army Institute of Research and a panelist, speculated that the research was rushed and badly done because it had started under intense pressure to help the war effort. Curing troops’ venereal diseases was a major goal of military medicine.

The panelists generally agreed that the ethical review boards now mandated by the American government, universities, foundations and medical journals would prevent similar abuses today by anyone spending taxpayer or foundation money.

Pharmaceutical and medical device companies also do research in poor countries and still need watching, panel members said. But large companies say publicly that they adhere to ethical principles.

“The problem in 1946,” Dr. Gutmann said, “was that ethical rules were treated as obstacles to overcome, not as fundamental bedrock of human dignity. That can still apply today. That’s why our panel is doing our report.”

Panel members endorsed the idea of creating compensation funds for subjects who are harmed in the future, or requiring researchers to buy insurance for that purpose. Some countries require these steps; the United States does not.

Elisabeth Malkin contributed reporting.

NY Times page

I follow these type of reports due to my own use in human experiments that were done by the military, and were done with consent which is a far cry from "informed consent" then to be told 40 years later in a letter from the Veteran Affairs that we are not allowed to talk to anyone other than the doctors at the VA about our experiiments issues, excuse me, I don't know any of the data about lethal doses, delivery systems or any other information that would be needed to make these substances into weapons let alone know how to re-create them.

http://edgewoodtestvets.org/ this is about the current active lawsuit over this

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