The Plutonium Files (76 page)

With the conservative political atmosphere, the group also was not about to recommend remedies or medical monitoring that would have cost millions of dollars and have required congressional approval. Oncologist Eli Glatstein said any effort to recommend compensation for the veterans, for example, “went out the window” when the Republicans took over Congress.
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“There was no sympathy for that.” Still, there was a voluminous record that unequivocally showed that thousands of unethical experiments had occurred during the Cold War. How was the panel to deal with that?

Again they invoked the difference between actor and act, condemning the experiment but not the experimenter. In their final report, which numbers 925 pages, the group did find that many of the studies were unethical, that doctors routinely violated their patients’ trust, and that subjects were not fully informed. With few exceptions, though, the panel declared no one was harmed, no one was to blame, and no one needed medical monitoring. “This report is the worst thing to happen to medical ethics since the Bible,” said David Egilman, a physician and professor at Brown University, and one of the people who helped spur the congressional investigation into the human experiments in the mid-1980s.
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“It’s constructed so that you can knowingly do something wrong to someone and not be punished; not only not punished but not even found responsible. Think about applying that to anything else in life!”

In brief, the committee managed to come up with only one very small group that was eligible for monetary compensation. In a tortuously worded statement, the panel declared that anyone who had been used in
an experiment in which the government tried to keep information secret out of fear of embarrassment or potential liability should be compensated. Although deception was rife in all the experiments, and in many of them for precisely those reasons, the only experimental subjects the panel specified as fitting into this category were the relatives of the plutonium injectees, a woman known as CAL-Z, who was injected with zirconium in 1948 by Berkeley scientists, and the fourteen people used in the Met Lab’s total-body irradiation experiment at the Chicago Tumor Clinic. Practically speaking, the only people who would actually receive any money were the families of the plutonium injectees because the identities of the zirconium patient and the fourteen TBI subjects have never been revealed.

The committee also made a general recommendation that subjects who were harmed in experiments that were not intended to have any therapeutic benefit be compensated. Many of the controversial projects, such as the testicular irradiation experiments, fell into this category. But the panel said it could not make specific recommendations about those experiments because it didn’t have time to undertake the individualized fact-finding.

Finally, the committee recommended that people who were used in radiation experiments in which they were not harmed but did not give their informed consent should be given a personalized apology. This recommendation was directed at the “tracer” studies, which comprised the majority of experiments done during the Cold War. With scant scientific data on which to base their conclusion and no information whatsoever about the identities of people used in the experiments, the Advisory Committee asserted repeatedly that most of the “tracer” studies caused no physical harm. But some of the tracer studies did, in fact, deliver large doses, and it’s impossible to say with certainty that no harm occurred without going to individual cases.

The Advisory Committee also constructed a peculiar ethical argument that linked the wrongness of an experiment to physical harm. “It should be emphasized,” the final report observed, “that often these non-therapeutic experiments on unconsenting patients constituted only minor wrongs.
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Often there was little or no risk to patient-subjects and no inconvenience. Although it is always morally offensive to use a person as a means only, as the burden on the patient-subject decreased, so did the seriousness of the wrong.”

Many critics took aim at this position, including editorial writers at the
Boston Globe,
the newspaper that broke the first stories on the radio
active breakfast cereal experiments done at the Fernald school. The
Globe
editorial said:

Once the panel had determined that most of the experiments were harmless, troublesome questions about whether the thousands of Americans who had been used in the studies should be notified and offered medical monitoring went away. If no one was harmed, then there was no need for notification and medical monitoring. In an early draft of its final report, the group did recommend medical monitoring for prisoners who had their testicles irradiated, but the panel changed its mind after it concluded that the cancer risk to the subjects was even smaller than what the original experimenters had calculated. Even Carl Heller, disabled by a stroke and lying on a plastic mattress, told attorneys in 1976 that the prisoners should be monitored for the rest of their lives. If the committee had recommended medical monitoring for one group of test subjects, it would have been hard-pressed not to recommend the same follow-up for people used in other experiments.

The panel based its recommendation against notification and medical monitoring on an unusual set of guidelines that were much more restrictive than what other public health agencies use. The criteria were (1) whether the person would have a greater than a 1 in 1,000 chances of dying from a
fatal
cancer as a result of the radiation exposure and (2)
whether early detection and treatment would medically benefit the test subject.

In a paper sharply critical of the committee’s work, Brown University’s David Egilman points out that other federal agencies, such as the National Institute of Occupational Safety and Health, have determined that all participants in any research study must be notified of the results, even if they show no health risk.
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Furthermore, he added that most agencies use a threshold of 1 in 1 million when evaluating health risks. By limiting the analysis to cancer mortality only, Egilman said the panel also avoided the sticky issue of other radiation-induced diseases and nonfatal malignancies, such as thyroid tumors, which are extremely painful and dependent on early intervention and medical monitoring for cure.

Even using its own highly restrictive guidelines, the committee found several groups of experimental subjects who were at risk of contracting a fatal malignancy as a result of their radiation exposure, including those who had undergone nasopharyngeal radium treatments and children who were the subjects of radioactive iodine studies. But the panel concluded notification and follow-up was still not warranted because screening methods were not very good and there was no evidence that the subjects would receive any medical benefit from early detection and treatment.

Ironically, the National Institutes of Health had recommended in 1977 that children who received the nasal radium treatments be examined every one to two years, Egilman points out.
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And early detection and treatment did benefit some experimental victims. John McCarthy, a political science professor in California subjected to the radium nasal treatments as a child, decided to get a check up after reading a 1994 newspaper article about the procedure. During the exam, his doctor found two small tumors on his thyroid. “I’ve got pretty good odds,” he told a reporter.
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“Had I not known about the risk of these treatments and begun to do some routine monitoring, I probably would not have addressed it for another five to eight years and the prognosis would have gone down sharply.”

Radiation oncologist Eli Glatstein believed patients given the radium nasal treatments should be medically monitored but was outvoted thirteen to one. Glatstein later told Stewart Farber, a Rhode Island health physicist who first brought the experiments to the public’s attention, that it was “not salable in today’s political environment” to recommend screening for so many victims.
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The committee did not hold one scientist accountable nor did it
single out any institution for blame. Instead, it chose to condemn the entire federal government and the medical profession, a condemnation so broad that it was the equivalent of blaming no one. Even the generic condemnation of physicians was written in a timid, tentative voice:

Despite the hundreds of intentional releases of radioactive material that took place over population centers without the public’s knowledge, the Advisory Committee did not recommend that such releases be banned. Instead the group advised that an independent panel review any proposed releases in the future to make sure the secrecy was being maintained for bona fide national security reasons and that measures were taken to reduce risk. Along similar lines, the committee also did not advocate that classified research with human subjects be outlawed. “Important national security goals,” the group wrote, “may suffer if human subjects research projects making unique and irreplaceable contributions were foreclosed.”
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Instead the panel urged the Clinton administration to develop regulations so that subjects of future classified research would be protected, adequately informed, and the documents declassified as soon as possible. (The federal government did subsequently develop new rules for classified research.)

The panel also failed to lay to rest the long-standing and bitter controversy involving the atomic veterans; it simply chastised the military for not keeping accurate records and urged that epidemiological tables used in compensating veterans be updated. The Advisory Committee was well aware that the federal government has spent millions on questionable dose reconstructions and, by comparison, pennies on veterans. But instead of issuing a strong statement that would help correct this grave injustice, the panel merely urged the government to determine whether existing laws were being administered in ways that “best balance allocation of resources between financial compensation to eligible atomic veterans
and administrative costs, including the costs and scientific credibility of dose reconstruction.”
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Although Ruth Faden had pledged to leave the record irrefutably straight,” the panel left the historical record in some ways, murkier than ever. Not surprisingly, its findings were a great disappointment to the experimental subjects and their families. Jerry Mousso, the nephew of one of the Rochester plutonium patients, said, I guess the government really won.
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All the culprits that planned and executed this thing got away with it.” Brenda Weaver, the Hanford woman whose daughter was born without eyes, observed, A book has been opened, a page read, and then it’s been closed.”
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Fred Boyce, one of the Fernald boys who participated in the Science Club, said, “For them to turn around and say that a little apology is enough … is just beyond belief.”
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And finally, Ron Hamm, who was exposed as a fetus to radiation when his mother was given the radioactive iron cocktail at Vanderbilt University, spoke for many when he said, I do feel betrayed and I feel abused by this committee’s report.”
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President Clinton formally accepted the Advisory Committee’s final report in a quiet ceremony at the White House on the morning of October 3, 1995. Hoisting the heavy blue volume into the air, he said, “This report I received today is a monumental document in more ways than one.
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It is a very, very important piece of America’s history.”

The president then condemned the experiments in straightforward language, leaving out all the caveats that muddied the committee’s report. He admitted that thousands of government-sponsored radiation experiments took place at hospitals, universities, and military bases throughout the United States during the Cold War. “While most of the tests were ethical by any standards, some were unethical, not only by today’s standards, but by the standards of the time in which they were conducted. They failed both the test of our national values and the test of humanity.”

Many of the experiments were performed on the atomic veterans and on the sick and the poor, he admitted, without their having any idea of what was being done to them. “Informed consent means your doctor tells you the risk of the treatment you are about to undergo. In too many cases, informed consent was withheld. Americans were kept in the dark about the effects of what was being done to them. The deception extended beyond the test subjects themselves to encompass their families and the American people as a whole, for these experiments were kept secret. And they were shrouded not for a compelling reason of national security, but for the simple fear of embarrassment, and that was wrong.”