Monday, January 4, 2016

Whatever happened to human experimentation?

Several years ago, the University of Minnesota hosted a lecture by Alan Milstein, a Philadelphia attorney specializing in clinical trial litigation. Milstein, who does not mince words, insisted on calling research studies “experiments.” “Don’t call it a study,” Milstein said. “Don’t call it a clinical trial. Call it what it is. It’s an experiment.”

Milstein’s comments made me wonder: when was the last time I heard an ongoing research study described as a “human experiment”? The phrase is now almost always associated with abuses. Ask people what they think of when they hear the phrase “human experimentation” and chances are they will reply, “Nazis.” James Jones gave his book Bad Blood the subtitle The Tuskegee Syphilis Experiment. Philip Zimbardo’s controversial study on the psychology of imprisonment is commonly referred to as “The Stanford Prison Experiment.” New Zealand’s most notorious research scandal, on women with cervical carcinoma in situ at Auckland Women’s Hospital, is known colloquially as “The Unfortunate Experiment.” Asking a prospective subject to sign up for a medical experiment would probably get roughly the same response as asking him or her to sign up for a police interrogation.

It wasn’t always this way. In the early days of American bioethics, scholars used the word “experimentation” in the same neutral way that they later began to use “research study” and “clinical trial.” Hans Jonas titled his famous 1969 Daedalus article “Philosophical Reflections on Experimenting with Human Subjects.” In the 1966 essay “Ethics and Clinical Research,” Henry Beecher made frequent use of phrases such as “experimental subjects,” “human experimentation,” and “experimentation in man.” Richard McCormick and Paul Ramsey often used the phrase “experimentation” in their debate in the mid-1970s about research on children. This usage reflected the vocabulary of medicine itself, in which the word “experiment” had not yet acquired a menacing undertone. For instance, Ancel Keys did not hesitate to use “experiment” in describing his work on the physiological effects of semistarvation at the University of Minnesota in the 1940s. In the two-volume book that resulted in 1950, The Biology of Human Starvation, Keys and his colleagues even titled one chapter “The Minnesota Experiment.”

By the time I began working in bioethics in the early 1990s, however, “experiment” was being phased out. Today, when anyone involved in health care uses “experiment,” it is usually in reference to scandals from the past. Over the past ten years, for instance, PubMed lists only thirty-four articles with the phrase “human experimentation” in their titles, and thirty of those concern either historical research abuses or ethically controversial research.

Experimentation has also disappeared from codes of ethics. When the Nuremburg Code was published in 1948, it referred to “experiments,” “experimental subjects,” and “experimental physicians.” It made no mention whatsoever of “research.” The first version of the Declaration of Helsinki, issued in 1964, employed a combination of phrases: sometimes “experimentation,” sometimes “research study.” That mixed language stayed relatively consistent through the next six revisions of the Declaration. But in 2008, when the Declaration was revised in Seoul, “experiment” was almost completely purged from the document. The word is used only once in the current version, and then only in reference to the need for “animal experimentation.”

What is the reason for such a dramatic shift?

For the answer, have a look at my latest article in The Hastings Center Report, "Whatever happened to human experimentation?"

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