Rigorous medical research is essential to develop efficacious drugs to combat illness, but strict ethical standards must be in place for that work to proceed. The most important of these rules governs informed consent. Participants should be told of possible consequences – good and bad – that can arise from a study prior to enrollment. Failure to provide that information violates every standard of decency and medical and scientific research.
The U.S. government admitted recently that its scientists were guilty of such a horrendous act more than 60 years ago in Guatemala. Scientists working there on a 1946-1948 National Institutes of Health study purposely infected as many as 700 Guatemalans with syphilis and other venereal diseases. They wanted to test the effectiveness of penicillin. Not a single subject in the experiment gave consent. They couldn’t. They were not told about the study or their roles in it.
The scientists’ failure to do so is much more than an ethical lapse. It has overtones of racial and economic elitism, and it reflects an arrogance that is the antithesis of the American notion of fair play. Unfortunately, that attitude seems to have been the norm rather than the exception in certain circles in the first half of the 20th century. The experiment in Guatemala, which ultimately provided no medically useful conclusions, was not the only appalling act of its kind.
Much closer to home, the same government medical establishment monitored but did not treat hundreds of black male sharecroppers with syphilis who lived around Tuskegee, Ala., for four decades beginning in 1932. Even when antibiotics that might have helped arrest the course of the disease became available, scientists did not tell the men about the drugs. They preferred to keep the study going rather than end it. It can hardly be coincidental that at least one scientist involved in the Guatemala experiments later worked in the Tuskegee study.
The U.S. government, understandably, was loath to reveal its complicity in the Guatemala experiments. Indeed, it admitted to its involvement only when a researcher uncovered evidence of events in Guatemala while examining papers about the Tuskegee study – and then made it public. More than the apology issued by the Obama administration – which apparently had no knowledge of the event – is in order.
The apology is welcome, but it won’t help those directly affected by the Guatemala experiment. It’s probably too late for U.S. officials to provide assistance, pay reparations or otherwise indemnify any survivors. What’s required now are government assurances that accounts of other similarly odious experiments aren’t hidden away in the files – or still being conducted in some far-away place. Admitting to an ethical failure might exact a high cost in lost national honor and prestige, but that is far preferable to the continued concealment of repugnant experiments on human beings.