Bioethics Forum Essay

What Research Scandals? Welcome to the Bioethics Memory Hole

For the past decade or so I have taught a seminar on abuses of human research subjects. When I started preparing for the seminar, I assumed that it would be a simple matter to find bioethics literature. After all, abuses such as the Tuskegee syphilis study and the Willowbrook hepatitis studies played an outsized role in the emergence of bioethics as a field. What I discovered, however, was that scholarly accounts of even the most iconic cases were often surprisingly hard to find. At best, the record is thin. At worst, it is distorted and factually mistaken.

Take, for instance, the CIA-funded studies by Ewen Cameron on psychiatric patients at the Allan Memorial Institute in Montreal during the 1950s and 1960s. Without their consent, the patients were given massive, repeated courses of electroshock therapy; they were dosed with LSD and other drugs; and they were put into comas for weeks or even months at a time. Once the patients had been “depatterned,” or brainwashed, Cameron attempted to rebuild them psychologically with a process he called “psychic driving,” in which they were forced to listen to taped instructions on a loop for up to 18 hours a day. Cameron destroyed the lives of his subjects, many of whom were exceptionally vulnerable, and achieved nothing of scientific value. His work is a catalogue of exploitation and abuse. Yet there is no comprehensive account of Cameron’s studies to be found anywhere in the bioethics literature.

A similar story could be told of a more recent, now-forgotten scandal: the bone marrow transplantation study at the Fred Hutchinson Cancer Research Center known as Protocol 126. For 12 years, researchers in Seattle attempted an experimental bone marrow transplant involving T-cell depletion on patients with leukemia and lymphoma. The subjects were not fully informed of the risks, which turned out to be considerable. Nor were they told that the investigators had significant conflicts of interest. By the time the study ended, all but two of the 82 subjects were dead, at least 20 of them from graft failure. If these patients had been given standard treatment, many would have had a 60% chance of cure.

In 2001, thanks to the efforts of oncologist-whistleblower John Pesando, The Seattle Times published a major series on the study called “Uninformed Consent,” by Duff Wilson and David Heath. It was short-listed for a Pulitzer Prize and honored with many other awards for journalistic excellence, including the George Polk Award for Medical Reporting. Yet if anyone wants to examine this case in a bioethics class, the only academic article is a brief summary by Robert Nelson in the journal IRB.

In the latest issue of the Hastings Center Report, Lauren Wilson and I have published our analysis of two patently unethical ketamine studies conducted by emergency physicians at Hennepin County Medical Center, our local safety net hospital. When Minnesota Star Tribune reporter Andy Mannix uncovered the studies in the summer of 2018, the main issue that sparked public outrage was the involvement of Minneapolis police officers in deciding when emergency responders should inject agitated people with ketamine. Mannix’s initial reports were followed by a series of disturbing revelations about the ties between Hennepin Healthcare emergency physicians, the Minneapolis Police Department, and Axon, the manufacturer of Taser stun guns. The Hennepin ketamine studies raise important, previously unexamined questions about the testing of chemical restraints and nonlethal weapons, yet seven years after they were first uncovered, the studies have been largely forgotten.

It is possible to put together a syllabus of such cases using newspaper and magazine articles, podcasts, scientific papers, Food and Drug Administration investigations, and legal proceedings. In addition, the memory of some abuses has been kept alive by book-length treatments – many by historians, a few by whistleblowers. Yet it is striking how many notorious cases go almost entirely unmentioned in the bioethics literature: the “bacteria-in-the brain” studies at University of California Davis, the suicide of Traci Johnson at Eli Lilly Laboratories, the death of Nicole Wan at the University of Rochester, James Halikas’s exploitation of Hmong opium addicts at the University of Minnesota, Robert Heath’s astonishing efforts to turn a gay man straight with deep brain stimulation at Tulane University. Even some of the most notorious abuses have been overlooked for decades. The medical historian Susan Reverby has called the injection of cancer cells into debilitated elderly patients at the Jewish Chronic Disease Hospital one of the “holy trinity” of bioethics horror stories, yet it took 45 years for a bioethicist – John Arras – to write about it.

Even worse is the misrepresentation of abuses. With the exception of the Tuskegee syphilis study, there is no post-war American research scandal more formative than the Willowbrook hepatitis program. Between 1956 and 1972, a team of researchers from New York University deliberately infected institutionalized, mentally disabled children at the Willowbrook State School on Staten Island with the hepatitis virus. As anyone who has looked into the history of Willowbrook knows, the conditions were horrific. It was filthy, foul-smelling, overcrowded, and understaffed. A 1972 television news report showed moaning children lying naked in puddles of their own urine. Senator Robert Kennedy famously called Willowbrook a “snakepit.”

Unlike many other research scandals, Willowbrook is discussed in bioethics textbooks and training modules, usually in summary form. Yet they often whitewash its true horrors. Exploring Bioethics, a National Institutes of Health module for high school students, claims that “specialized facilities with expert services were often seen as the best places for mentally disabled children, and parents were eager to get their children into them, including Willowbrook.” Not exactly. Not only does that cheerful description misrepresent the actual conditions at the school, it omits the extreme measures that Willowbrook administrators took to hide those conditions from the parents, many of whom were poor and desperate for any kind of help with their disabled children.

Perhaps the most stunning way the Willowbrook hepatitis program has been misrepresented is the severity of the risks. Saul Krugman, the architect of the Willowbrook studies, defended infecting the children with hepatitis by claiming that virtually every child at Willowbrook would have contracted hepatitis within a year anyway. For years, many bioethicists left Krugman’s claim unchallenged, despite published evidence that the risk was actually somewhere between 30% and 53%. Even more shocking is the fact bioethicists have typically presented the Willowbrook study as if Krugman infected children only with hepatitis A. In reality, Krugman also conducted studies in which he infected children with hepatitis B – a dangerous, potentially lethal disease that the children at Willowbrook had virtually no risk of contracting outside the study.

What could account for such widespread omissions and misrepresentations? On the face of it, they seem difficult to explain. One possibility is that bioethicists (mistakenly) see research scandals as unfortunate but conceptually uninteresting – more like medical malpractice than like novel moral problems. Another may be the sheer difficulty of getting the facts about scandals, especially in the United States, where investigations are conducted behind closed doors and legal proceedings often end with a confidentiality agreement. Yet another possibility is that bioethicists, having embedded themselves in the medical-industrial complex, are reluctant to teach and write about medical institutions behaving so disgracefully over such a long period of time.

The absence of any sustained attention to research scandals has left a gaping hole at the center of bioethics scholarship and teaching. Only by looking at these scandals side-by-side is it possible to discern patterns and points of similarity: What led to the abuses, who exactly the subjects were, how the abuses were exposed, whether the subjects (or their families) were compensated, and most importantly, how the abuses might be prevented. Bioethicists owe a large debt to the historians who have excavated the research scandals of the past, but not all scandals have been consigned to history. If you pay attention, you can see them at medical institutions everywhere, including your own. Of course, the problem with looking too closely is that you may be repelled by what you see.

Carl Elliott, MD, PhD, is a professor in the Department of Philosophy at the University of Minnesota and a Hastings Center Fellow. His most recent book is The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No. Bluesky: carlelliot.bluesky.social X: @FearLoathingBTX