A House committee may take aim Wednesday at the EPA’s plan to censor the science it uses in its policies by forcing the disclosure of private medical and health records, a step science advocacy groups say would undermine government research.
Members of the House Science, Space and Technology Committee are expected to broach the proposal at the hearing and will likely question Jennifer Orme-Zavaleta, a medical doctor and EPA science adviser, over the proposed rule and how the agency uses science broadly.
A draft of an addition to the unfinished rule, called Strengthening Transparency in Regulatory Science, is a more aggressive version of a 2018 EPA proposal and targets scientific research that draws links between health problems and air and water pollution.
Unlike the previously proposed rule, this addition would apply retroactively and is more sweeping in its scope, according to a draft obtained by The New York Times.
The proposal, which has yet to be released, is the latest effort to challenge established science at the agency tasked under law with protecting public health.
After the Times published its story Monday night, the EPA, which declined to comment for the original article, said the proposal would “not apply to any regulations already in place” and said the draft was an “outdated” supplement to the 2018 rule.
Researchers scrutinizing the connections between environmental and health hazards often comb through medical records.
“It’s pretty common for them to study records of patients in hospitals,” said Barbara Gottlieb, director of environment and health for the Physicians for Social Responsibility. “They need to relate exposure levels to health outcomes in human beings.”
But EPA’s proposal could lead to the publication of patient files and the personal records of people who participate in studies, creating a chilling effect on robust research and potentially dissuading volunteers for new studies.
A 2016 study by Johns Hopkins University researchers, who used health records of 35,000 asthma patients to examine fracking effects in Pennsylvania, is the type of rigorous work that could be excluded from EPA consideration in the future.
“Good science is science that can be replicated and independently validated, science that can hold up to scrutiny,” Andrew Wheeler, the EPA administrator, said at a congressional hearing in September.
The problem: Making health data points anonymous is a grueling and expensive process, preventing many scientific studies from being replicated without releasing personal information.
“They want health data public or EPA can ignore that scientific research,” said Paul Billings, national senior vice president for public policy at the American Lung Association. “This includes some of the seminal studies that show that particulate matter causes premature death.
“This is about trying to have results-driven science to support a political agenda rather than improve transparency,” he added.
The two foundational studies that loom largest are the so-called “Six Cities” study by Harvard University, which in 1993 linked particulate matter pollution and mortality rates, and a separate American Cancer Society study on air pollution.
To complete Six Cities, scientists signed confidentiality agreements to examine private medical and work histories of more than 22,000 people in six metropolitan areas.
Researchers point to those as groundbreaking efforts. Michael Halpern, of the Union of Concerned Scientists, said this sort of proposal is meant to block the EPA from considering studies like those.
“Their intent was to avoid using specific air pollution studies,” said Halpern, the deputy director for the Center for Science and Democracy at UCS. “One way to do that was to use methods that would violate ethical and medical norms.”
The testimony at Wednesday’s hearing of Orme-Zavaleta, the EPA science adviser, is likely to be of interest to Halpern.
“How does it impact the work that EPA scientists do on risk assessments?” Halpern said. “How does it affect research on established and emerging threats to public health?”
The sweep of the proposal could be incredibly broad, he said, and block EPA from considering “any kind of research that involves humans.”
Alan Krupnick, a senior fellow at Resources for the Future, a nonpartisan organization, said there is a budding trend for more data — codes, models, raw information — to be included in scientific journals, such as Nature or Science.
But he firmly disputed the idea pressed into the public domain by former Rep. Lamar Smith, R-Texas, and ex-EPA Administrator Scott Pruitt that scientists were writing regulations behind closed doors and manipulating figures without third-party corroboration.
Some conservatives and industry groups backed Smith’s so-called “Secret Science” bill in 2017.
“The notion that it’s secret, that there’s some cabal,” Krupnick said, “is just really ridiculous and offensive to the scientific process.”
Most researchers are checking their peers’ work and doing so fairly and rigorously, he said. “People are comparing and sifting, and people are being honest and straightforward.”
Gottlieb said the proposal appears to be an effort to gut other EPA rules.
“This regulation exists in order to be able to challenge a swath of regulations that we count on today,” she said. “They’re trying to weaken the scientific record.”
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