July 16, 2020

Tuskegee and ethics

President Clinton’s recent apology to the victims of the infamous Tuskegee Syphilis Study was inevitably too little and 25 years too late. But it also was absolutely right and necessary.

In making one gesture to the few survivors of the hideous government experiment, the president performed several invaluable services: he reminded the nation of one of the most shameful episodes in its history, one many would prefer to forget; he made a start toward closing the widening chasm of distrust between black and white America; and, perhaps most importantly for the future, he set the stage for the vital discussion society must have on ethics and science.

Tuskegee was a classic, horrifying case of what happens when bureaucratic expediency marries scientific arrogance. In the U.S. Public Health Service study that started in 1932 and lasted for nearly 40 years, 399 black men in rural South Alabama signed up for a medical care program, unaware they had syphilis and unaware they were actually guinea pigs in a government study on the effects of the disease.

Left untreated, even after penicillin was discovered to be an effective treatment in 1947, 28 eight of those men died, slowly and painfully, from the disease, and another 100 from associated complications. Forty of their wives were infected, as were 19 of their children who contracted the disease at birth.

The government settled a class action lawsuit with the victims and their survivors in 1973, one year after the outrage was exposed, but it had never admitted any wrongdoing. Until the ceremony in Washington Friday.

But President Clinton did more than merely tender the nation’s apology, pledging $200,000 to establish a Center for Bioethics in Research and Health Care at Tuskegee University (which had no role in the experiment) and creating a program of bioethics fellowships for black students.

That’s important, given Tuskegee’s devastating legacy. Studies show that black people who are aware of the study are far more mistrustful of their government, far less likely to seek health care (including immunizations for their children) and more prone to believe that diseases such as AIDS are part of a genocidal conspiracy. Racial wounds in this country are deep and devastating — the government’s role should be to heal, certainly not to contribute to the damage.

“What was done cannot be undone but we can end the silence,” the president said.

The silence surrounding Tuskegee is ended, but still curiously silent is the scientific community, conspicuously absent from the Washington ceremony. As they delve deeper and deeper into uncharted territory, scientists must acknowledge fully and without reservation that their obligation to humanity does not get laid aside when the lab coat gets put on, that the scientific method is not a license to kill or to do harm.

Tuskegee was an abomination but, sadly, not an abomination limited to the Dark Ages. Just last year, the federal National Institutes of Health funded a $2.7 million research project by the University of Alaska on whether needle-exchange programs for injection drug users reduce the spread of the AIDS virus without leading to an increase in drug use. Had it not been for ethics watchdogs, the researchers were ready to sacrifice to deadly disease a control group of drug users by denying them access to the exchange program and to a vaccine for the hepatitus B virus.

Students at Tuskegee University now will have the study of ethics as an on-going, constant companion to their scientific curriculum. Until students at every university have the same, until ethics is a guiding principle in every research lab, the president’s apology will be mere words, soon forgotten.

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