Doctor Feel Good

If the predictions of University of Virginia bioethicist John Arras are accurate, history will look kindly on our scientists, which can’t be said for many previous generations of U.S. researchers. 

“I don’t think anything about the current state of research ethics would absolutely appall us 50 years from now,” said Arras. “We’re appalled by Tuskegee. We’re appalled by Willowbrook. But today we’re dealing with issues that are less clear.” 

Arras is a member of the Presidential Commission for the Study of Bioethical Issues, which was formed by President Barrack Obama in 2009 to identify and promote policies that ensure ethical responsibility in scientific research, health care delivery and technological innovation. The panel spent the last nine months investigating U.S. Public Health Service studies done in Guatemala after World War II, and recently concluded its research with a report entitled “Ethically Impossible: STD Research in Guatemala from 1946 to 1953.” 

During that period, federally-funded American researchers intentionally infected about 1,300 Guatemalan prisoners, soldiers, orphans and mental health patients with syphilis, gonorrhea or chancroid, through contact with prostitutes or exposure to bacterial puss. Fewer than 700 subjects were treated with antibiotics, and at least 83 died, although it was not clear if the experiments killed them. The study took place at a time when diseases like syphilis and gonorrhea were widespread among returning World War II veterans, and were seen as one of the biggest threats to U.S. public health. 

References to the study were first uncovered last October by Wellesley College professor Susan Reverby. Later, President Barack Obama personally apologized to Guatemalan President Álvaro Colom. 

Arras believes that moral judgement can be rightly lodged against the researchers, but stresses the historical development of research ethics. “These researchers not only resented so-called ‘do-gooders,’ but viewed ethics as something to keep the press and public off your back,” Arras says. “This was a common attitude at the time. They viewed science as the highest good and the only thing that really mattered.” 

Although the 1947 Nuremberg Code affirmed the need for informed, voluntary consent, the U.S. medical community continued to debate the value and requirements of consent for decades. “There were a lot of very distinguished scientists in this country who continued to hold that they, themselves, were the best guarantees of safety, and that rules only impeded research,” said Arras. “Since then there’s been a sea change. Now, most researchers would say that standards of ethics are just part of the process.” 

The researchers in the Guatemalan study, led by Dr. John Cutler, who was later involved in the infamous Tuskegee syphilis experiments, initially aimed to see if penicillin could prevent infection after exposure to sexually transmitted diseases, but changed their stated goals several times. Beyond that, the studies were poorly designed, haphazardly executed and entirely unethical, the commission concluded. 

In a 1947 letter to doctors at the Marine Hospital in Staten Island, New York, Cutler wrote: “This morning I saw all of the 130 patients on whom we are doing syphilis studies. This was an exciting experience: all of the women inoculated and receiving prophylaxis show no evidence of infection, in contrast to controls, all of whom showed physical evidence of take…. We left them feeling exhilarated…. We felt as though we were getting somewhere.” 

Arras holds that Cutler, who died in 2003, must have known from the Nuremberg doctors’ trials under way by 1946 that his work was unethical. Cutler was also aware of a New York Times article published on April 27, 1947, that stated that it was “ethically impossible” for researchers to “shoot living syphilis germs into human bodies,” and took appropriate measures to ensure the secrecy of his work. 

Arras asserts that these days, a taxpayer-funded study similar to Cutler’s would be impossible because of the institutional review boards that must approve all federally-funded research. Arras identifies the greater potential for unethical behavior in the increasing number of private companies conducting pharmaceutical research oversees, in countries with less developed regulatory structures. 

“We have our unsettled issues,” Arras said. “For example, the use of placebos in other countries, [and] the extent to which you have to share the benefits research done in poor counties with the people there. Those are issues of fairness and justice that we’ll eventually work our way through and reach a consensus on.” 

As to the ethical quandaries of 2031? “A lot of interesting research on the brain is going to happen between now and then, which is going to have a lot of implications for human freedom and human responsibility,” said Arras. “Issues of synthetic neurobiology will be very interesting. Buying a genetic synthesizer from eBay and creating organisms from scratch in your basement. That’s going to be problematic.”

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