The astounding revelation that U.S. medical researchers intentionally gave Guatemalans gonorrhea and syphilis more than 60 years ago is so horrifying that we want to believe that what happened then could never happen today. We want to believe that doctors are treating the poor, vulnerable and those outside the U.S. with more care and respect.
But are they? Have we really learned what we should have from the travesty of past medical experiments?
In recent years, there has been a steady shift of clinical research from testing in the U.S. and other developed nations to the developing world. A report from the United States Department of Health and Human Services noted that roughly 80 percent of drug approvals in 2008 were based in part on data from outside the U.S. Eight percent of drugs approved for use in the U.S. were only tested using subjects in foreign nations.
As more testing is outsourced to other nations, there is a very real moral worry that we are still exploiting the poor to serve as guinea pigs so we can improve our medical care.
As we keep learning, it has happened too many times in the past.
Susan Reverby, a distinguished historian at Wellesley College in Massachusetts, has spent her career shedding light on past horrors. She has long researched the infamous Tuskegee Syphilis Study, the experiment where poor, black men in rural Alabama were deliberately left untreated for syphilis by government researchers eager to learn about the disease’s effects. The study, somehow, was allowed to run from 1932 to 1972.
More recently, Reverby came across documents that showed that Dr. John C. Cutler, a physician who would later be one of the researchers involved in the Tuskegee study, was involved in a completely unethical research study much earlier in Guatemala.
Cutler, who went to his grave defending the Tuskegee experiment, directly inoculated unknowing prisoners in Guatemala with syphilis and also encouraged them to have sex with diseased prostitutes for his research from 1946-48.
It’s easy to think he was a rogue doctor or a mad scientist. But his work was sponsored by lauded organizations such as the United States Public Health Service, the National Institutes of Health with collaboration of the Pan American Health Sanitary Bureau (now the Pan American Health Organization), and the Guatemalan government.
Reverby's discovery of this awful chapter in the history of American medical research set off a whirlwind of activity among American officials. Secretary of State Hillary Clinton and Health and Human Services Secretary Kathleen Sebelius have already offered formal apologies to the nation of Guatemala. President Obama was scheduled to call the country's president as well.
At the time of the Guatemalan experiment, no federal rules were in place governing the protection of human subjects, noted Dr. Francis Collins, the director of the National Institutes of Health.
Nonetheless, officials knew it was wrong.
The surgeon general at the time, Dr. Thomas Parran, said, ”You know, we couldn’t do such an experiment in this country.”
So why is all this so important? Why is an unethical prison study done 60 years ago of any concern today?
There are two reasons. The impact of Tuskegee experiment has had a lasting effect on the lack of trust and suspicion minorities have about medical research. And it renews ongoing ethical uncertainly about conducting studies in poor nations.
Tuskegee lives on in the memory of the African-American community. Trust in medical research remains tenuous because of what was done to great-grandparents and friends. Many African-Americans believe that the government let doctors give people syphilis. While that did not happen in Tuskegee, the revelation of the Guatemalan research is a stark reminder that racism and indifference to the weak and the vulnerable did permit incredible abuses.
The horrific study is a reminder that we need to remain vigilant about the ethics of doing research using subjects who may be desperate for any type of medical attention or who may not fully understand what they are being asked to do.
Some of the best researchers in America were involved with Tuskegee and the Guatemalan syphilis studies. That was no guarantee that what they did was ethical then — nor is it now.
Arthur Caplan is director of the Center for Bioethics at the University of Pennsylvania.