The Plutonium Files (75 page)

Rosalie Jones and Bernice Brogan traveled down from Utah to tell the panel how their husbands, former convicts at Utah State Prison, received multiple injections of radioactive materials. Four of the babies
fathered by ten of the men in the experiment subsequently died of birth defects. “The path to hell is paved with good intentions,” said Brogan, one of the women whose infants died.
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“Us mothers, we were given the path to hell.”

William Tsosie worked at a uranium mine near Shiprock, New Mexico, for seven and a half years. His clothes covered with uranium dust, he went home to his wife and children at the end of each shift. He often ate supper or played with the children without changing clothes or bathing. Tsosie once took back to his trailer a chunk of high-grade uranium ore and placed the rock on the window above his bed. “We never been told what it is until later on, and it’s too late.
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We’re already contaminated. We’re already exposed,” he said.

Barney Bailey was ordered onto the battleship
New York
two hours after the underwater bomb, Shot Baker, was detonated during Operation Crossroads. Located near the center of the bull’s-eye, the battleship was listing badly when the young man boarded. “We were there three days, three days and three nights on that ship.
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No warning, no protective clothing. We never heard of radiation. We were seventeen-year-old kids, most of us. We had no idea.”

The Santa Fe audience stirred angrily as three retired Los Alamos scientists walked to the witness table. Among them where George Voelz, who had examined Karen Silkwood, and Don Petersen, who had scraped Cecil Kelley’s diarrhea and vomit from the walls and floor of the emergency room. Petersen vividly described the scientific “stampede” to get radioisotopes after the war. “Now all of a sudden there was this bonanza.
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You could ask Oak Ridge, and Oak Ridge would provide you with information and with a tracer, a radiotracer, and you could approach your experiment in a way that had never been possible before. Now that enthusiasm overshadowed any soul searching about ethical considerations.”

Petersen was so excited about the possibilities of radioisotopes and so confident that small amounts posed little risk that he used two of his own children in radioactive iodine tracer studies. “My five-year-old took one look at this, and she said she didn’t want anything to do with it, so she got to stay home.
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The six-year-old and the eight-year-old were very interested in this, and they participated.” Each of the children received about fifteen millirem of radiation, the equivalent of what a tourist in Sante Fe gets in thirteen days, he recalled. (Sante Feans are exposed to more radiation because the city is more than a mile above sea level.)

“I guess it’s a fine line,” remarked committee member Duncan
Thomas, “between a child consenting in full knowledge of all the facts, and being consented by their parents who are talking them into it.”
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Petersen responded, “There is no question but what their daddy talked them into it but he was only two-thirds successful.”

The final outreach meeting was held March 2 in the grand ballroom of Knoxville’s Radisson Summit Hill Hotel. In their neatly coiffed hairdos and carefully pressed dresses, the women who once attended Vanderbilt University’s prenatal clinic ticked off the strange illnesses that had befallen them or their children after they drank the radioactive iron cocktails. Emma Craft said, “I want you to tell President Clinton that I want an apology from somebody and I want some answers.”
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Ron Hamm, whose mother was pregnant with him when she drank the cocktail, said, “We were violated in the worst possible way.
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I was a fetus, I had no choice. My mother was an unsuspecting young lady and she had no choice. But what did happen to her in that room, in my estimation, was tantamount to rape.”

Frank Comas, a physician, appeared before the president’s Advisory Committee to defend the work done by the Oak Ridge doctors. “It is with some sadness and also some annoyance, I must confess, that I am obliged to try to exonerate ourselves for something perceived by some as devilish acts where science was God and damn all other considerations.”
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As the hearings progressed, the committee tried to figure out a way to judge the experiments. A subtle rift soon appeared in the companionable facade the group presented to the public. According to an executive order from President Clinton, the committee’s task was to find out whether there was a clear medical or scientific purpose for the experiments; whether appropriate medical follow-up was conducted; and whether the experiments met the ethical and scientific standards, including the standards of informed consent, that prevailed at the time and that exist today.
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Once that evaluation had been completed, the group could then make recommendations about the need for notification and medical follow-up for the experimental subjects or their descendants.

The instructions from the president clearly indicated that the committee would have to make judgments. But most of the members were hesitant to do so. Instead they wanted to write a descriptive account of the experiments and focus their energy on trying to make recommendations that would ensure that unethical experiments would not occur in the future. “We don’t want to pass severe moral judgments, particularly because it’s much more important to really look at the present,” said Jay Katz, a venerable ethicist from Yale University who had escaped Nazi Germany with his family when he was a child.
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Although Katz was a gentle and empathetic man, he, like other committee members, seemed to treat the radiation experiments as if they were an abstract, historical event. He frequently argued that the 1940s, 1950s, and 1960s were a period of “ethical chaos” in medicine and that the radiation experimenters shouldn’t be singled out. Paternalism governed the relationship
between doctor and patient during that period, he asserted, and patients were rarely informed of anything.

The other panelists shared Katz’s reluctance to make judgments about the individual experimenters. But their hesitation was based more on the sketchy nature of the documents and the fact that the experimenters weren’t alive or available to defend their actions. Patricia King, one of the two attorneys, said, “I felt then and I feel now that we were not structured to make judgments in individual cases absent some pretty clear evidence.”
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The idea of judging also didn’t sit well with Henry Royal, a radiologist at Washington University who perhaps more than anyone else represented the experimenters’ viewpoint. The doctors, he argued, may have gotten oral consent from the patients. “What I would like to know,” he said in an interview, “is what did the investigator say to the patient?”

Ruth Macklin, a professor at Albert Einstein College in the Bronx and perhaps the most eloquent of the three ethicists, refused to let her colleagues off the hook so easily.
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If the panel did not want to make judgments, she said, “then we can’t talk about anyone having been wronged by the conduct and we can’t begin to talk about remedies.”
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Macklin argued that the committee needed to hold individuals accountable in order to deter future researchers from performing unethical experiments and to provide justice to the victims.

Eventually the group came up with an ingenious compromise that sidestepped the issue of whether individuals should be held culpable and ensured that a unanimous report would be delivered to the president. The committee declared that separate judgments could be made about the
wrongness
of an action and the
blameworthiness
of the person who committed the act. Simply put, it separated the experiments from the experimenters. “If experiments violated basic ethical principles, institutional or organizational policies or rules of professional ethics,” the panel wrote, “then they were and will always be wrong.
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Whether and how much anyone should be blamed for these wrongs are separate questions.”

While the committee was trying to develop its ethical framework, the political atmosphere in Washington shifted dramatically. For the first time in forty years, Republicans captured a majority in both houses of Congress during the November 1994 elections. Social programs were out; fiscal austerity was in. Some panelists said the changed atmosphere didn’t color their work at all. But others confessed it had a profound effect on their deliberations and the recommendations they eventually sent to President Clinton. Remembered panelist Eli Glatstein, a radiation
oncologist: “The mind-set of the Republicans, particularly the young House members, was so extreme and so partisan that it toned down virtually every decision that the committee could reach.
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It was very clear that we wanted to have recommendations that Congress would take up. It was clear that our scope had to be toned down after that election. The last thing the committee wanted was to make recommendations that would be refused.”

One immediate response to the changed political climate was the committee’s reluctance to ask the White House for an extension to complete its work. By December of 1994, a month after the elections, it was clear the group was not going to finish its assignment in its one-year time frame. Eventually the panel did get a six-month extension and a pared-down staff to help draft its final report, but it was not nearly enough time to adequately analyze and synthesize the voluminous documentary record.

Many contemporary scientists defended the Cold War experiments when the controversy first erupted, claiming that ethical standards were different in the past from what they are today. But the documents clearly showed that government officials recognized decades ago that the voluntary and understanding consent of the human subject was essential for an experiment to be ethical. The Atomic Energy Commission had rules by 1947 and the Defense Department by 1953 requiring researchers to obtain the consent of sick patients for therapeutic and nontherapeutic experiments.

Furthermore, the documents show that the experimenters understood the rules. Thomas Shipman, the physician who supervised Los Alamos’s health division through much of the Cold War, advised the Los Alamos Medical Center in 1951 that patients should not be given non-therapeutic irradiation unless the procedures were explained and consent obtained. “In other words, we should not carry out on a patient a procedure even mildly experimental while intimating to the patient that this is part of his regular treatment.
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The situation, it seems to me, is quite comparable to the use of a relatively new drug.”

The writings of Robert Stone, an inveterate experimenter, also show that physicians, even during World War II, recognized that they needed the consent from sick patients for experiments. Of the patients exposed to total body irradiation during the Manhattan Project, Stone wrote, “No signed consent was received from the patient, but the treatment was explained to them by the physicians and they, in full knowledge and facts, accepted the treatments.”
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While Stone may not have always followed the rules, records show that he was also extremely familiar with the AMA’s code of ethics and the Nuremberg Code. During a meeting at UCSF’s Cancer Board in 1952, he argued against an experiment in which an investigator proposed transferring malignant melanoma cells to terminally ill patients.
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“Dr. Stone stated that he felt such a procedure was not in line with the basic principles governing human experimentation outlined at the War Crimes Tribunal at Nuremberg or the code of ethics regarding human experimentation adopted by the American Medical Association.
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In particular, the investigator could not terminate the experiment and it would not seem to serve any purpose to benefit humanity.” The Cancer Board subsequently refused to allow the experiment to proceed.

The formerly classified transcripts of the TBI debates held at the Pentagon demonstrate clearly that both military and civilian scientists were familiar with the Nuremberg Code. The code was even read aloud at the Pentagon during a November 10, 1952 meeting of the Committee on Chemical Warfare.
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Despite the new evidence, Jay Katz continued to assert his long-held belief that the researchers did not think the Nuremberg Code had practical bearing on their work. “The Nuremberg Code is an aspirational code and, as I’ve observed, it speaks to the stars,” he declared at one meeting. “It is a document not for earthlings, but for the heavens.” Although many new declassified documents showed unequivocally that there were rules and ethical guidelines governing the radiation experiments, Katz dismissed them as bureaucratic “lip service.” In a separate statement appended to the committee’s final report, he wrote: “Most references to consent (with rare exceptions) that we uncovered in governmental documents or in exchanges between officials and their medical consultants were meaningless words, which conveyed no appreciation of the nature and quality of disclosure that must be provided if patient-subjects were truly to be given a choice to accept or decline participation in research.
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Form, not substance, punctuated most of the policies on consent during the Cold War period.” (Katz makes the same argument about the consent process in many contemporary experiments.)

The Advisory Committee also asserted that experimenters had a tradition of obtaining consent from “healthy subjects” but not from “patient-subjects.” For some reason, the committee expended considerable intellectual effort trying to prove there were different practices for these two groups, but the theory is not substantiated by the written evidence.

Although hopes were high for the committee, it became apparent
over a matter of months that the group didn’t have the political will or the desire to thoroughly probe the Cold War experiments. Both Ruth Faden and Jay Katz appeared to be more interested in finding out whether informed consent rules were being followed by contemporary experimenters—certainly a worthwhile endeavor but not the one for which they had been hired. Other members, such as Henry Royal, were determined to see that the reputation of the radiation research community was not unduly smeared. And Kenneth Feinberg, the other lawyer on the committee, was alleged by critics to have been placed on the panel to ensure that compensation to subjects would be kept low. Feinberg denied the allegations, but he did argue at one meeting that the evidence was too “marginal”
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for the committee to use as a basis for remedies. “It’s interesting. It tells a story. But it’s hardly the stuff for recommending to the Congress that somebody get $50,000 or medical monitoring or a life insurance policy or health insurance or even a letter of apology.”