DOE Decision On Health Records Draws Challenges From Skeptics

The U.S. Department of Energy may well have expected applause when it announced in June that it would allow independent researchers to analyze the health records of workers at the nation's nuclear reactors and weapons facilities. After all, the decision was meant to address the public's growing concern about the environmental impact of the nation's 45-year experience with nuclear materials. At the same time, the decision would reverse a long-time DOE policy of restricting access to its employees' health records to only a select number of private contractors, a practice that activists claim has led to vast underreporting of the health consequences to 600,000 scientists and others working in some 76 facilities around the country. But the general response to a June 13 letter from Energy Secretary James Watkins to Sen. John Glenn (D-Ohio) has been something less than wild enthusiasm. Health activists have questioned DOE's motives in making the announcement, and they accuse the department of creating an elaborate, lengthy, and costly mechanism that will stymie rather than foster research. Glenn wants another federal agency to oversee any such analysis. And most scientists say that, although it sounds like a good idea, they plan to withhold final judgment until the details are clear. "I'll be the first person to eat my hat if they release it [employee health information] in any usable form and in any reasonable time period," says Jonathan Berger, executive secretary of the Three Mile Island Public Health Fund, a non-profit group set up to conduct radiation studies after the 1979 accident at the Pennsylvania nuclear plant. "They're afraid of open scientific debate and inquiry on this subject; they've bad control of it for 25 years." DOE's decision to open the health records may stem from an "accumulation of embarrassments" involving U.S. nuclear facilities, says Len Weiss, staff director of the Senate Committee on Governmental Affairs, which Glenn chairs. Evidence of "environmental degradation" to the areas surrounding the plants, Weiss says, has led to concern that plant workers are being exposed to perilous levels of radiation. Glenn wants jurisdiction for epidemiological studies transferred to the Department of Health and Human Services (HHS). Such a move not only would provide oversight by an agency with considerable experience in such research issues, Weiss notes, but also would remove the conflict arising from DOE's role as an agency with a mission to manufacture nuclear weapons. Another group lobbying for transfer of jurisdiction to HHS is Physicians for Social Responsibility (PSR). "It's a step' in the right direction," says Todd Peny, PSR's associate director for policy, about Watkins' announcement. "We'd like to help him go in that direction by making these changes statutory." The DOE decision represents a shift in its long-standing policy of restricting access to the records to researchers under contract to the department. Jeff Sherwood, a DOE spokesman, says the change is a result of Watkins' commitment "to establishing environmental safety and health as a priority." The data expected to be made available to qualified epidemiologists, Sherwood says, include: personnel records, giving in-formation such as job titles of the employees, a key to the workers' degree of exposure; health physics records, the readings routinely taken from employees' radiation badges; payroll records, showing the dates of employment; and industrial hygiene records, which Sherwood says relate to the "safety and health of workers." DOE estimates that data on as many as 600,000 employees, including current and former workers, both living and deceased, will be involved. The department has said the data repository will take six years to create, at a cost of $36 million. But Berger questions why "taxpayers should pay another $36 million for doing work that's already been done." Adds Perry, "We're questioning why this has to take so long. It's clearly not his [Watkins'] top-priority agenda. We'd like to see this work expeditiously done." The cost and length of the project stem from the amount of data collection that must be done before the records can be made public, says Robert Wood, acting associate director for health and environmental research at DOE's Office of Energy Research. "It's just a very, very substantial effort," he says. Information on the degree of exposure of all DOE workers must be correlated with data on the cause of death for those workers who are deceased. Then, names must be removed, and the data must be validated. In addition, says Wood, the department must work out arrangements with state governments to provide researchers with information on causes of death. While the department has agreed to release raw data-the records that exist at the plant sites-Berger asserts that what should be made available are the records that have been gathered and corrected by DOE contractors to produce database files, the material that the contractors are working with. PSR's Perry concurs, adding that since data on 300,000 workers have already been entered onto a computer tape, making the records available should be "as simple as copying them." But Wood says that the department considers the files the property of the contractors, "to work with and develop into a paper that is published." It would be improper, he contends, for DOE to let other scientists use these files. DOE has asked the National Academy of Sciences to decide the mechanism for allowing access to the records. NAS has named two committees to oversee access to the records: a Committee on DOE Radiation Epidemiological Research Programs, chaired by Richard D. Remington of the University of Iowa, and a Committee on Occupational Health Effects of Ionizing Radiation Among Nuclear Utility Workers, chaired by Clark W. Heath Jr. of the American Cancer Society. NAS committee members will advise DOE on making the health data available to the scientific community through an archival repository, make recommendations for DOE guidelines on granting access to the repository, and review scientific protocols submitted by investigators requesting use of the database. Most members of the panels were reluctant to discuss their envisioned roles before the committee had met. But panelist Arthur C. Upton, director of the Institute of Environmental Medicine at New York University, asserts that "as a scientist and a physician, I'm interested in the truth: If there are problems in the work Lite, let's identify them and correct them." Another committee member, William J. Schull, Ashbell Smith Professor of Academic Medicine at the University of Texas, warns that the process will take some time: "It would surprise me if [the committee] could get it done in short of a year." Perry and Berger have a number of objections to the NAS committees. Perry says DOE's oversight of their work constitutes a potential conflict of interest. He is also upset that the committees have "no specific mandate other than to review the program." Furthermore, he adds, "There's no deadline, and no reporting requirements." Shirley Fry, director of the Center for Epidemiologic Research at the Oak Ridge Associated Universities Medical Sciences Division in Oak Ridge, Tenn., has been doing epidemiological studies on workers' health records since 1977. Her group, one of three DOE groups investigating mortality data on workers exposed to radiation, is studying several populations of employees, plant by plant, dating to the 1940s. These studies are investigating research and development and production workers at DOE facilities nationwide, some of which are now closed. Major sites include the Los Alamos National Laboratory in New Mexico, the Lawrence Livermore National Laboratory in California, and the Hanford reservation in Washington, now the largest U.S. nuclear waste storage facility. Fry's group has published 13 studies of various plant-worker populations. Among their findings have been a lower death rate than expected among Oak Ridge workers, no link between brain cancer and radiation exposure among Oak Ridge workers, and fewer deaths than expected among workers at the Savannah River Plant in Aiken, S.C. They found a statistically significant, but unexplained, increase in deaths from leukemia among hourly employees hired before 1955 who worked at the Savannah River Plant between five and 15 years. "We are beginning to put certain plant populations together," says Fry. The target date for final results, originally set for 1990, is now 1992. After the three DOE groups combine their results, the correlated findings will be further combined with results from Britain and Canada. "You need large populations to have enough statistical power to detect an effect, if one is [present]," she says. But Perry and Berger are not impressed by these studies. Since Fry and her colleagues work under DOE supervision, Perry says, "you can't really say they're independent of DOE." Adds Berger: "There's no confidence in their effort." Nevertheless, despite their differing political agendas, there is one point on which the activists and Energy Department officials agree: The data in question are a tremendously valuable source of information on the health risks of radiation exposure. The records of those who have worked in DOE facilities since the 1940s, says PSR's Perry, constitute "the largest and best set of exposure data known to man." Scientists Ponder Change in DOE Policy Scientists who have worked at the Department of Energy national labs seem pleased with the news that additional health studies will be carried out. But they worry about protection of their privacy and keeping access to the records confined to qualified individuals. Robert Park, director of the American Physical Society's Washington office, worked at Sandia Labs for 10 years and counts himself among the 600,000 workers whose records may be opened for independent study. "I think it's high time" that DOE made such information available, he says. "People should have been raising hell about it not being made available." Restriction of access to health records, Park maintains, "has been used to cover up shoddy procedures for years. Disasters that have occurred in our production facilities couldn't have happened in an atmosphere of openness." Park cautions, however, that it is "important that anonymity be protected" for those whose records are involved and that researchers "make a clear proposal in advance," outlining their methods for ensuring that workers' privacy will not be violated. If such precautions are taken, he-says, "I can't imagine anyone being disturbed about it." A scientist currently working at one of the national labs, speaking on condition of anonymity, is less sanguine about the opening of her records. "If it's done anonymously, I guess I don't have any problem with it," she says. "But you hate to see the government taking this step into your private life. Health records contain some information that I presume is personal." "As it happens, I have nothing to worry about," says Harry Bingham, who has done research at a number of national labs and is now a particle physicist at the University of California, Berkeley. "But if I happened to have syphilis or something, I would hope that they kept my name out. I would hope they would do this in a way that is discreet. "I think it's a good idea to know what we can about effects on health, positive or negative," says Bingham. But he predicts that the findings will turn out to -be positive: "Safety is taken very seriously at the labs. Radioactive substances are tightly controlled. I think it would be healthy to have this confirmed, and, if not, to find out why." Carl Bender, a professor of physics at Washington University in St. Louis, has worked at the Los Alamos National Laboratory. "I think it's just great" that the health records will be made available, he says. "I believe in openness." However, Bender cautions, "I hope there won't be any concealment in large numbers [and that there will not be] such an enormous forest of records that the important records will get lost." For example, he says, "I don't care if they release my medical records personally, but I have never been near any radioactive material; I work in an office." -B.S.

DOE Decision On Health Records Draws Challenges From Skeptics

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