Tuskegee: what six hundred men were told, and what was done to them for forty years

The letter was headed "Last Chance for Special Free Treatment". It invited the men of Macon County, Alabama, to attend for a procedure that was free, that was described as treatment, and that was in fact a diagnostic spinal tap — a long needle into the base of the spine, done without anaesthetic in the field conditions of the rural South in the 1930s.

There was no treatment. There was never going to be any treatment. That was the design.

Six hundred men in Macon County

The United States Public Health Service began what it called the Tuskegee Study of Untreated Syphilis in the Negro Male in 1932. It enrolled 600 Black men: 399 who already had late-latent syphilis, and 201 who did not and served as controls.

None of them were told they had syphilis. They were told they had "bad blood" — a local phrase covering anaemia, fatigue and several unrelated conditions — and that the government was treating it. In exchange for turning up they received hot meals on examination days, transport, free care for unrelated complaints, and burial insurance, which in Macon County in 1932 was not a small thing.

The study was designed to run to autopsy. The endpoint was the men dying and their bodies being examined, and the burial money was what made the families agree to the post-mortems.

What could have been done, and when

In 1932 syphilis treatment meant arsenic and heavy metals: Salvarsan, mercury ointments, bismuth. It was a long, toxic, unreliable course, and a defence of the study's origins usually rests here — that in 1932 there was arguably not much to withhold.

That defence expires in 1943, when penicillin became the treatment of choice for syphilis and was becoming widely available. From that point the men were being denied a cheap, safe, curative drug so that the record of what untreated syphilis does to a body could be completed.

It went on for another twenty-nine years. Local physicians were asked not to treat the men. When some of them were called up in the 1940s and the draft board ordered treatment, the study's administrators sought exemptions.

It was in the journals the whole time

Here is the part that does not fit the shape people expect, and it is the most important thing in the case.

The study was not secret. The first report — "Untreated Syphilis in the Male Negro: A Comparative Study of Treated and Untreated Cases" — appeared in Venereal Disease Information in 1936, under the names of Raymond Vonderlehr, Taliaferro Clark, Oliver Wenger and John Heller. Around a dozen further papers followed over the next thirty years, in journals any physician could read. In 1969 the Centers for Disease Control convened a panel to review whether the study should stop, and decided that it should continue.

So this is not a case of a programme hidden from the profession and then exposed. The profession knew. It read the papers, and for thirty-six years nothing in it moved.

Peter Buxtun

Buxtun was a venereal disease interviewer for the Public Health Service in San Francisco. He heard about the study in 1966, requested the files, read them, and filed a formal protest on ethical grounds with the Division of Venereal Diseases in November of that year.

He was answered and overruled. He filed again in November 1968, this time arguing that the study was politically indefensible as well as morally so. He was overruled again. It was after the 1969 panel voted to continue that he took the documents to the press.

On 25 July 1972 the Associated Press ran Jean Heller's story. The headline was "Syphilis Victims in U.S. Study Went Untreated for 40 Years".

It was on the front page of the Washington Star that day and everywhere the following morning.

Four months from the story to the end

An Ad Hoc Advisory Panel was appointed within weeks. In October 1972 it advised that the study be stopped; in November the Assistant Secretary for Health announced that it had been. In March 1973 the panel recommended that the surviving men be given medical care for life, and the Tuskegee Health Benefit Program was created to provide it. In 1975 the men's wives, widows and children were added to it.

The panel's finding was that the study had been ethically unjustified — that the knowledge to be gained did not begin to justify the risks, and that there had been no evidence of informed consent from any participant at any point.

Charlie Pollard, one of the men, went to see a lawyer. The lawyer was Fred Gray, who had represented Rosa Parks and Martin Luther King. Gray filed on Pollard's behalf in July 1973 and brought a class action for the participants and their families. It was settled out of court in 1974 for $10 million: $37,500 to each surviving man in the syphilitic group, $16,000 to each surviving control, and lesser sums to the heirs of those already dead.

16 May 1997

Eight of the men were still alive. Five came to the White House: Herman Shaw, Charlie Pollard, Carter Howard, Fred Simmons and Frederick Moss. Three were represented by family.

President Clinton said that they had been denied help and lied to by their government, and then said this:

What the United States government did was shameful, and I am sorry.

Bill Clinton — Remarks at the White House, 16 May 1997

Herman Shaw turned 95 two days later.

What the case built

The congressional response to Tuskegee was the National Research Act of 1974, which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission's report, published in 1979 and named after the conference centre where it was drafted, set out three principles for research on people: respect for persons, beneficence, and justice.

The Belmont Report is why institutional review boards exist, why informed consent is a document rather than an understanding, and why a researcher today cannot simply decide that a population is a suitable subject.

The other legacy is measured in mistrust, and it is not a myth or an overreaction. It is the rational response of communities who were told, correctly, that this happened.

What was actually proven

That the US Public Health Service enrolled 600 Black men in Macon County in 1932, told 399 of them who had syphilis that they had "bad blood", and observed them without treatment.

That penicillin became the standard treatment in the 1940s and was deliberately withheld from them until 1972.

That there was no informed consent, and that a federal advisory panel established this in 1973 and said the study should never have continued.

That the government settled a class action in 1974, provided lifetime medical care to the survivors and their families, and apologised at the White House in 1997.

What remains exaggerated

That the researchers infected the men with syphilis. They did not. The men had contracted syphilis before enrolment; that is why they were selected. The CDC states this plainly, and it matters — not because it makes the study less indefensible, but because the false version is easy to disprove and every disproof of it is used to wave away the true version.

That confusion has a real source. Between 1946 and 1948 the same Public Health Service funded research in Guatemala in which people were deliberately infected with syphilis and gonorrhoea. That happened, a historian found the records in 2010, and a US president apologised for it. It is a separate case, and it belongs in its own piece.

That all 600 men died of syphilis. They did not. The commonly cited figures — 28 deaths directly from syphilis, around 100 from related complications, 40 wives infected, 19 children born with congenital syphilis — come from later reconstruction rather than any count made at the time, and the honest position is that the full toll was never established because nobody was ever counting it.

That it was a secret programme. It was published from 1936 onward, reviewed internally, and allowed to continue by a panel in 1969. Calling it secret makes it sound like an aberration that oversight would have caught. Oversight looked at it and let it run.