These are questions that have bedeviled scientists, doctors, and ethicists for decades, and in Pain, Pleasure, and the Greater Good, Cathy Gere presents the gripping story of how we have addressed them over time. Today, we are horrified at the idea that a medical experiment could be performed on someone without consent. But, as Gere shows, that represents a relatively recent shift: for more than two centuries, from the birth of utilitarianism in the eighteenth century, the doctrine of the greater good held sway. If a researcher believed his work would benefit humanity, then inflicting pain, or even death, on unwitting or captive subjects was considered ethically acceptable. It was only in the wake of World War II, and the revelations of Nazi medical atrocities, that public and medical opinion began to change, culminating in the National Research Act of 1974, which mandated informed consent. Showing that utilitarianism is based in the idea that humans are motivated only by pain and pleasure, Gere cautions that that greater good thinking is on the upswing again today and that the lesson of history is in imminent danger of being lost.
Rooted in the experiences of real people, and with major consequences for how we think about ourselves and our rights, Pain, Pleasure, and the Greater Good is a dazzling, ambitious history.
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Trial of the Archangels
The story of the archangels' fall begins, appropriately enough, in an infernal time and place. Mandatory informed consent was born amid the ruins of Nuremberg, the ancient Bavarian city where Hitler had held his annual Nazi Party rallies, images of which can still startle and disturb with their atmosphere of overwhelming unity of hateful purpose. Nuremberg had been bombed to rubble by the Allies during the last months of World War II. A fierce ground battle in April 1945 left even more damage in its wake. After the German surrender on May 8, the devastated city found itself in the center of the American zone of occupation.
The question had already arisen of where in the shattered world the Nazi war criminals should be tried. In Nuremberg, the old law court building, a grand and gloomy structure from 1909, was left standing at the end of the war, miraculously intact amid still-smoking wreckage. The symbolism proved irresistible. After a brief wrangle with the Soviets, who wanted to try the Nazis in their territory in Berlin, it was determined that the International Military Tribunal — a cooperative effort involving judges and lawyers from all four occupying powers — would be held in the Nuremberg courthouse. The Palace of Justice, as the building was known, was hastily refurbished. A wall was removed in the main courtroom to accommodate the anticipated crowds of spectators and reporters. Between November 1945 and October 1946, twenty-one Nazi defendants stood trial for crimes against peace, war crimes, and crimes against humanity, the world's first foray into international law.
As teams of Allied investigators researched the details of the Nazi killing machine, they started hearing horrifying accounts of medical experiments carried out in the camps. In May 1946 a commission was set up to investigate "War Crimes of a Medical Nature." Clearly, these were criminal activities of a very special kind. Meetings of the commission revealed deep divisions among the members on the nature of the wrong that had been done. The question of the scientific utility of the experiments kept muddying the waters. In one revealing exchange, a French representative asked if death had to result in order for scientific research to count as criminal. A spluttering reply to this question from the commission chairman — "We can not discuss what is crime and what is not" — exposed the bafflement of the investigators faced with heinous acts committed in the name of the healing arts. Another four-power trial began to seem unrealistic, and the Americans started to pursue their own case against Nazi medical science. In October 1946 President Truman announced that a second series of war crimes trials would be held in Nuremberg under the exclusive jurisdiction of the United States. The first of the series was to be the Medical Trial.
The American investigators quickly ran into a legal and ethical roadblock. Most of the Nazi experiments had been conducted on prisoners condemned to death. From a strictly legal standpoint, these researches in the death camps might legitimately be compared with studies conducted in America's prisons. In June 1945, for example, Life magazine had run a piece celebrating a series of malaria experiments in American penitentiaries, in which eight hundred men had been deliberately infected with the disease using trapped mosquitoes. The article featured the magazine's signature black-and-white photographs, including one of a prisoner lying in bed, eyes closed, face drawn and pale, in whom, according to the caption, the disease had been "allowed to progress considerably." The American lawyers started to worry about the numerous examples of Allied human experimentation that could be presented at the trial as part of the defense's argument. It was a genuinely knotty question. How could the prosecution make a case against the Nazi doctors without catching American research practices in the toils of international justice?
The attorneys cabled the secretary of war, who turned to the surgeon general, who suggested that the American Medical Association was the appropriate body to untangle the mess. The AMA nominated an eminent physiologist by the name of Andrew Ivy, then in his early fifties. As the scientific director of the Naval Medical Research Institute during the war, Ivy had supervised high-altitude studies and seawater studies using conscientious objectors, work that was similar — at least in substance — to some of the investigations undertaken by the Nazis. An energetic defender of animal experimentation, he had also shown that he could be trusted to protect the interests of the American medical profession in the face of fierce ethical criticism. Media-savvy and a proven believer in the value of aggressive experimentation, Ivy seemed the perfect man for the job.
In July 1946 Ivy set off for Washington, DC, where he spent a few days reading up on what was known about Nazi medical crimes. He then flew to Germany and met with a group of German aviation scientists. At the end of the month he traveled to Paris to attend a meeting of the International Scientific Commission on War Crimes of a Medical Nature. Here he swung into action on behalf of the medical research establishment, stressing that "the publicity of the medical trial should be prepared so that it will not stir public opinions against the ethical use of human subjects for experiments." What was needed, he suggested, was a "pragmatic instrument" to be "adopted and publicized for the purpose of contrasting ethical and unethical experimentation." In a report he sketched the outline of such an instrument, in the form of a set of "Principles and Rules of Experimentation on Human Subjects." The first of these principles was "Consent of the subject."
On December 9, 1946, the Medical Trial opened. Twenty-three defendants were accused of barely imaginable atrocities. Their victims had been put in low-pressure chambers to test the effects of high altitude, until they suffocated from lack of oxygen. They were made to stand naked in subzero temperatures, screaming with pain as their bodies froze. They were deliberately infected with malaria and epidemic jaundice. Sections of bone, muscle, and nerve were removed from their arms and legs. Wounds were inflicted on them, exacerbated with ground glass and wood shavings, and infected with gangrene, bacteria, and mustard gas. They were starved and given nothing but chemically treated seawater to drink. They were burned with phosphorus from incendiary bombs. In the most macabre example of all, 112 Jews imprisoned at Auschwitz were murdered and "defleshed" in order to provide material for a skeleton collection, commissioned for the express purpose of displaying the anatomical basis of their racial inferiority.
The proceedings began with a long and stirring speech by the chief prosecutor, a charismatic, handsome, ambitious lawyer by the name of Telford Taylor. Taylor pointed out that "to kill, maim, and to torture is criminal under all modern systems of law." Given the horrendous nature of the crimes, he explained, "no refined questions" of morality needed to detain the tribunal: "Were it necessary, one could make a long list of the respects in which the experiments which these defendants performed departed from every known standard of medical ethics," he observed. "But the gulf between these atrocities and serious research in the healing art is so patent that such a tabulation would be cynical."
Back in the United States, however, the American Medical Association was embarking on exactly the cynical tabulation that Taylor had pronounced unnecessary. Far from being dispensable, these ethical questions were in urgent need of resolution, forced onto the table by the prospect of all human experimentation, Allied and Nazi alike, being put in the dock in Germany. On December 10, one day after the opening statements in Nuremberg, the judicial council of the AMA formally adopted a skeleton version of Ivy's guidelines for human subjects research. Buried deep in the small print of the Journal of the American Medical Association a couple of weeks later, the following announcement could have been spotted by a particularly assiduous reader:
In order to conform to the ethics of the American Medical Association, three requirements must be satisfied: (1) the voluntary consent of the person on whom the experiment is to be performed; (2) the danger of each experiment must be previously investigated by animal experimentation, and (3) the experiment must be performed under proper medical protection and management.
In this aborted little paragraph, the consent provision did not even merit a full sentence.
Back in Nuremberg a few weeks later, in January 1947, the trial took the turn the prosecution had feared. The Americans had called as a witness a German psychiatrist who had been persecuted by the Nazis during the war. They hoped that he would attest to the state of German medical ethics before the Third Reich, and thereby establish a baseline of homegrown legal standards against which the defendants' actions could legitimately be judged. The witness duly outlined what he saw as the core of Hippocratic medicine: a reverence for life, which had been grossly dishonored by his compatriots. The leading defense lawyer then proceeded to cross-examine him. After getting the witness to agree that experimentation on prisoners was unethical, the lawyer whipped out the Life magazine article about malaria research in American penitentiaries. With dramatic emphasis he read it aloud, describing in detail each of the featured photographs. At the end of this performance he asked the man in the stand if the research sounded ethical. The witness admitted that it did not.
Ivy was in the courtroom during this exchange. He promptly flew back to the United States, where he met with Dwight Green, the governor of Illinois, who had authorized the largest of the prison studies, and suggested that they convene a committee to investigate the experiments. The governor agreed, and in March 1947 he contacted some Illinois citizens to see if they would be willing to serve. In June Ivy went back to Nuremberg, where he testified that the committee had concluded that the prisoners had volunteered for the malaria experiments as freely as any free men. It was a lie. The "Green Committee" had not, in fact, ever convened. Ivy had written the exculpatory report himself.
Following up, one of the American prosecution lawyers asked Ivy if the new AMA rules accurately represented the principles upon which "all physicians and scientists guide themselves before they resort to medical experimentation on human beings in the United States?" Ivy answered, "Yes." "To your knowledge," the lawyer prompted, "have any experiments been conducted in the United States wherein these requirements which you set forth were not met?" Ivy answered, "Not to my knowledge." At this point one of the defense lawyers jumped in, objecting that the American Medical Association ethical guidelines had been adopted in 1946 and had "no retroactive force." He was overruled. It was allowed to stand that voluntary consent of research subjects was always — and had always been — sought by American and Allied researchers, in conformity with the ethics of the whole "civilized world."
In vain did the defense suggest that the tribunal "study the many experiments performed all over the world on healthy and sick persons, on prisoners and free people, on criminals and on the poor, even on children and mentally ill persons," to establish the fact that their Nazi clients had been adhering to internationally approved ethical standards. In vain did they submit a document detailing research conducted in Allied countries, involving a total of approximately eleven thousand human subjects. As well as the eight hundred Illinois prisoners infected with malaria, the memo listed the controlled malnutrition diets inflicted on prisoners in New York State that gave seven of them pellagra, the cholera trials in India in which a control group was left untreated resulting in scores of deaths, the administration of poisons to condemned prisoners, the deliberate infection of conscientious objectors with hepatitis, the six cancer patients who died after experimental cooling therapy, and many more. The researchers in charge of these experiments, the defense pointed out, "gained general recognition and fame; they were awarded the highest honors; they gained historical importance." Why, then, were their Nazi clients being treated as criminals for the same kinds of activities?
One of the lawyers for the accused challenged Ivy to ponder a thought experiment in which a plague-ridden city could be saved with the sacrifice of a single condemned prisoner. Asked whether he was "of the opinion that the life of the one prisoner must be preserved even if the whole city perishes," Ivy answered, "Yes." He could see where this line of questioning was leading — if it was permissible to use one prisoner to save a city, then it was permissible to experiment on prisoners in German concentration camps to save an army — and he was not going to put so much as a tentative toe on the slippery slope of utilitarian arguments. In the context of the trial, the perilous elasticity of the concept of the greater good called for a principle that enshrined the absolute rights of every individual over the calculable benefits to the collective.
Accordingly, in August 1947, when the judgment in the Medical Trial was handed down, it sanctified the principle of informed consent, strengthening and formalizing it as the first and preeminent provision of the Ten Commandments of experimentation ethics now known as the Nuremberg Code:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have the legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. The latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The first commandment of the Nuremberg Code is replete with historical irony. In 1931, on the eve of Hitler's rise to power, a set of guidelines issued by the Health Council of the German Weimar Republic included the injunction: "A new therapy may only be administered if the person concerned or their legal proxy gives unambiguous consent on the basis of an appropriate explanation." At the Nuremberg Trial, Ivy had appealed to these 1931 guidelines as evidence for the universality of medical ethics. But mandatory informed consent was far from universal. It was, in fact, quintessentially German, springing from a concept of transcendent human dignity found in the moral philosophy of Immanuel Kant. No other nation had seen fit to formalize the principle of consent before the war.
There is little doubt that the framers of the Nuremberg Code, including Andrew Ivy, saw consent as the proper foundation for medical ethics. For most Allied researchers, however, there was another ethical system that trumped it. The principle of societal benefit was so deeply rooted in the practices, goals, and achievements of scientific medicine that mandatory informed consent was regarded as not just unnecessary but as actively burdensome and counterproductive. The rights of the patient or research subject did not figure in this ethos. It was the scientist who enjoyed rights, including the right to distribute the burdens and benefits of the research enterprise as he saw fit.
Excerpted from "Pain, Pleasure, and the Greater Good"
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Table of ContentsIntroduction Diving Into the Wreck
1 Trial of the Archangels
2 Epicurus at the Scaffold
3 Nasty, British, and Short
4 The Monkey in the Panopticon
5 In Which We Wonder Who Is Crazy
6 Epicurus Unchained
Afterword The Restoration of the Monarchy Notes