Wednesday, October 6, 2010

Unwilling Participants

Socrates: "All things are knowledge, including justice and temperance, and courage—which tends to show that virtue can certainly be taught."
Protagoras

"[No one will be able to] deter the scientific mind from probing into the unknown any more than Canute could command the tides."
— Warren Burger [1907-95], Former Chief Justice, US Supreme Court
 

"For seeing they saw not, and hearing they understood not, but like shapes in a dream they wrought all the days of their lives in confusion."
Aeschylus, Prometheus Bound
     
In the 1940s and 1950s, a number of United States medical researchers used unwilling participants from outside the U.S. to test the efficacy of drugs. A lack of ethical oversight is one of the reasons stated for such abuses on human dignity and rights, but it might have more to do with a lack of morality and a large dose of old-fashioned scientific hubris.

One case recently came to light, says the New York Times, in U.S. Apologizes for Syphilis Experiment in Guatemala.  Led by lead scientist, Dr. John C. Cutler, almost 700 Guatemalans were deliberately infected with syphilis between 1946 and 1948. As the New York Times article reports:
The experiment, overseen by a researcher who would later participate in the infamous Tuskegee study, in which black American male sharecroppers with syphilis were deliberately left untreated for decades, was done to test the effectiveness of penicillin.

“Although these events occurred more than 64 years ago, we are outraged that such reprehensible research could have occurred under the guise of public health,” Mrs. Clinton and Ms. Sebelius said in a statement. “We deeply regret that it happened, and we apologize to all the individuals who were affected by such abhorrent research practices.”

The Guatemalan president, Álvaro Colom, who first learned of the experiments on Thursday in a phone call from Mrs. Clinton, called them “hair-raising” and “crimes against humanity.”

His government said it would cooperate with an American investigation and carry out its own.

The experiments were discovered by Susan M. Reverby, a medical historian and professor of women’s studies at Wellesley College in Wellesley, Mass., who has written two books about the Tuskegee study.
Ten years later, the US Central Intelligence Agency conducted experiments using LSD, a psychedelic drug, on unwilling and unsuspecting patients at Montreal's Allan Memorial Institute at McGill University. Project MKULTRA was led by Dr. Donald Ewen Cameron. The CIA paid him $69,000 from 1957 to 1964, and the Canadian government contributed additional funds to support the human experimental trials (For more background, see History Podacst):
In addition to LSD, Cameron also experimented with various paralytic drugs as well as electroconvulsive therapy at thirty to forty times the normal power. His "driving" experiments consisted of putting subjects into drug-induced coma for weeks at a time (up to three months in one case) while playing tape loops of noise or simple repetitive statements.
His experiments were typically carried out on patients who had entered the institute for minor problems such as anxiety disorders and postpartum depression, many of whom suffered permanently from his actions. His treatments resulted in victims' incontinence, amnesia, forgetting how to talk, forgetting their parents, and thinking their interrogators were their parents.
Yet, laws were drafted for the purpose of protecting the weak, says the Los Angeles Times. "Since the drafting of the Nuremberg Code in 1947, the laws governing medical experimentation on human beings have been regularly updated to require informed consent, the right of refusal, prohibition of testing likely to result in permanent injury or death, and more." Ten principles form part of the Nuremberg Code, and informed consent is one of the chief principles.

Frankenstein: Victor Frankenstein becoming disgusted at his creation., "The Monster." Illustration from the frontispiece of the 1831 edition by Theodor von Holst. Source: Tate Britain.  Private collection, Bath. Steel engraving (993 x 71mm) for frontispiece to the revised edition of Frankenstein by Mary Shelley, published by Colburn and Bentley, London 1831.
The novel, Frankenstein, by Mary Shelley, was first published in 1818, when Ms. Shelley was 19.
Even though the Nuremberg Code was not yet drafted when the Guatemalan experiments started in 1946, the law was in effect when the experiments continued on to 1948. The law was certainly well-known and well-established by the time Dr. Cameron conducted his experiments by giving LSD to unwilling participants, again with US and Canadian government complicity.

Such examples, and there are likely more unreported cases, only show that these medical researchers considered the advancement of science more important than legal and moral considerations. Canada and the US (and other nations) now have very stringent ethical guidelines for medical experiments and the use of human subjects for drug trials. But laws in themselves, although important to restrain scientific curiousity, are not enough to thwart unscrupulous behaviour.

Orac, a pseudonym for a surgeon and scientist, makes such a point in his blog, Respectful Insolence:
Even more disturbing is the general attitude among several researchers seemed to view law breaking as sometimes necessary for the advancement of medical science, as Thomas Rivers, who led the Rockefeller Institute for Medical Research Hospital in New York, made clear in his memoir in 1967:
Well, all I can say is, it's against the law to do many things, but the law winks when a reputable man wants to do a scientific experiment. For example, the criminal code of the City of New York holds that is a felony to inject a person with infectious material. Well, I tested out live yellow fever vaccine right on my ward in the Rockefeller Hospital. It was no secret, and I assure you that the people in the New York City Department of Health knew it was being done....Unless the law winks occasionally, you have no progress in medicine.
A wink-wink response is typical of highly arrogant ideologues who equate scientific curiosity with necessary progress and advancement, no matter the cost or risk to human life. With little regard to the assault on human dignity, which never enters their calculus. In such thinking, scientific or medical advancement trumps ethical and moral considerations—in all cases. Science for science's sake.

This lapse in morality is something that Roger Shattuck brings forth in his fine cautionary work: Forbidden Knowledge: From Prometheus to Pornography. Of course, Mary Shelley's Frankenstein is a cautionary tale, worth reading, if only to remember some of the moral issues quickly forgotten in our exhuberence for technological and scientific advancement

As Prof. Shattuck puts forth, reading literary works form part of the solution, helping us grapple with truth and knowledge, or at least give us another view of the world that is not ground in scientific certainty:
We need ideas to reason logically and to explore the fog of uncertainty that surrounds the immediate encounter with daily living. Equally, we need stories to embody the medium of time in which human characters take shape and reveals itself to us, and which we discover our own morality.
On this issue and others, I find myself in full agreement with Prof Shattuck.

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