Was it three years ago? Almost to the day, from the looks of it.
Biomedical research, then, promises vast increases in life, health, and flourishing. Just imagine how much happier you would be if a prematurely deceased loved one were alive, or a debilitated one were vigorous — and multiply that good by several billion, in perpetuity. Given this potential bonanza, the primary moral goal for today’s bioethics can be summarized in a single sentence.
Get out of the way.
A truly ethical bioethics should not bog down research in red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as “dignity,” “sacredness,” or “social justice.” Nor should it thwart research that has likely benefits now or in the near future by sowing panic about speculative harms in the distant future.
That was Steven Pinker arguing that biomedical research is too ethical. Follow that link and you’ll see my counter-example: the Tuskegee syphilis study. It is a literal textbook example of what not to do in science. Pinker didn’t mention it back then, but it was inevitable he’d have to deal with it at some time. Thanks to PZ, I now know he has.
At a recent conference, another colleague summed up what she thought was a mixed legacy of science: vaccines for smallpox on the one hand; the Tuskegee syphilis study on the other. In that affair, another bloody shirt ind the standard narrative about the evils of science, public health researchers, beginning in 1932, tracked the progression of untreated latent syphilis in a sample of impoverished African Americans for four decades. The study was patently unethical by today’s standards, though it’s often misreported to pile up the indictment. The researchers, many of them African American or advocates of African American health and well-being, did not infect the participants as many people believe (a misconception that has led to the widespread conspiracy theory that AIDS was invented in US government labs to control the black population). And when the study began, it may even have been defensible by the standards of the day: treatments for syphilis (mainly arsenic) were toxic and ineffective; when antibiotics became available later, their safety and efficacy in treating syphilis were unknown; and latent syphilis was known to often resolve itself without treatment. But the point is that the entire equation is morally obtuse, showing the power of Second Culture talking points to scramble a sense of proportionality. My colleague’s comparison assumed that the Tuskegee study was an unavoidable part of scientific practice as opposed to a universally deplored breach, and it equated a one-time failure to prevent harm to a few dozen people with the prevention of hundreds of millions of deaths per century in perpetuity.
What horse shit.
- “patently unethical by today’s standards”, “a universally deplored breach”: In reality, “Numerous research improprieties between 1950 and 1974 in the United States prompted Congressional deliberations about human-subject-research oversight.” The Tuskegee study so outraged the public that Congress set up a commission to develop ethical standards for science, and turned its findings into law. Scientists of the time had to be legally compelled to act ethically, and over time came to (mostly) embrace them.
- “a misconception that has led to the widespread conspiracy theory that AIDS was invented in US government labs to control the black population”: In reality, that was a 1989 Soviet disinformation campaign. The Tuskegee experiment only made the conspiracy plausible, by casting doubt on the ethical standards of US scientists.
- “when antibiotics became available later, their safety and efficacy in treating syphilis were unknown”: In reality, “penicillin became the drug of choice for syphilis in 1947“. The Tuskegee study started in 1932, and finished in 1972. For twenty-five years, scientists knew penicillin was an effective cure yet actively discouraged study participants from taking it.
- “latent syphilis was known to often resolve itself without treatment”: In reality, latent syphilis was still treated because doctors realized that the symptoms may re-emerge. The clue is in the name itself: “latent” does not mean “cured,” it means “present but hidden.”
- “defensible by the standards of the day”: And slavery was considered defensible at one point. So what? Besides, the study broke contemporary laws and ethics guidelines, and the details drive that point home:
To persuade the community to support the experiment, one of the original doctors admitted it “was necessary to carry on this study under the guise of a demonstration and provide treatment.” At first, the men were prescribed the syphilis remedies of the day — bismuth, neoarsphenamine, and mercury — but in such small amounts that only 3 percent showed any improvement. These token doses of medicine were good public relations and did not interfere with the true aims of the study. Eventually, all syphilis treatment was replaced with “pink medicine” — aspirin. To ensure that the men would show up for a painful and potentially dangerous spinal tap, the PHS doctors misled them with a letter full of promotional hype: “Last Chance for Special Free Treatment.” The fact that autopsies would eventually be required was also concealed. As a doctor explained, “If the colored population becomes aware that accepting free hospital care means a post-mortem, every darky will leave Macon County…”
- “it equated a one-time failure to prevent harm to a few dozen people”: In reality, according to that last source, “28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis.” As of August last year, 12 former children were still receiving financial compensation.
- “the prevention of hundreds of millions of deaths per century in perpetuity”: In reality, the Tuskegee study wasn’t the only scientific study looking at syphilis. Nor even the first. Syphilis was discovered in 1494, named in 1530, the causative organism was found in 1905, and the first treatments were developed in 1910. The science was dubious at best:
The study was invalid from the very beginning, for many of the men had at one time or another received some (though probably inadequate) courses of arsenic, bismuth and mercury, the drugs of choice until the discovery of penicillin, and they could not be considered untreated. Much later, when penicillin and other powerful antibiotics became available, the study directors tried to prevent any physician in the area from treating the subjects – in direct opposition to the Henderson Act of 1943, which required treatment of venereal diseases.
A classic study of untreated syphilis had been completed years earlier in Oslo. Why try to repeat it? Because the physicians who initiated the Tuskegee study were determined to prove that syphilis was ”different” in blacks. In a series of internal reviews, the last done as recently as 1969, the directors spoke of a ”moral obligation” to continue the study. From the very beginning, no mention was made of a moral obligation to treat the sick.
Pinker’s response to the Tuskegee study is to re-write history to suit his narrative, again. No wonder he isn’t a fan of ethics.