As the country focuses on how to address the COVID-19 pandemic, many federal government agencies are moving forward with non-COVID-related policy actions. Notably, the Environmental Protection Agency (EPA) recently published an updated proposed rule with a stated goal of increasing transparency in science at the agency. However, despite its specified purpose, this proposal would undermine sound science and put Americans’ health and the environment at risk. It would restrict the use of the best available science in the EPA’s policymaking, meaning decisions affecting millions of people could be based on inadequate information that fails to include well-supported studies by expert scientists.  

This is not the first time we’ve highlighted the danger of this proposal. For nearly two years, the American Lung Association has partnered with The Michael J. Fox Foundation for Parkinson’s Research (MJFF) to lead a coalition of health, medical, academic and scientific organizations informing the EPA about concerns with this proposal on science. In July 2018, efforts resulted in a letter from nearly 70 groups citing concerns with the proposal’s impact on the integrity of science and patient privacy, as well as a press conference that included representatives from MJFF and the Lung Association.

Our two organizations are again teaming up to lead a similar letter in opposition to the supplemental notice of proposed rulemaking.

“We joined with The Michael J. Fox Foundation and dozens of other groups to shine a spotlight on the harms of EPA’s proposed ‘censoring science’ rule,” said American Lung Association National President and CEO, Harold P. Wimmer. “If the EPA enacts this rule, their use of the best science will be severely limited, likely resulting in pollution limits that do not adequately protect public health.”

In November 2019, MJFF CEO Todd Sherer, PhD, testified on Capitol Hill before the U.S. House Committee on Science, Space and Technology. He and four other witnesses testified that the rule did not accomplish its stated goal of increasing the use of good science at the agency.  

“If the proposed rule were enacted, patient privacy would be at great risk, and thousands of studies would be excluded from the EPA’s evaluation process when it comes to policymaking,” Dr. Sherer said. “The EPA must continue to balance the need for scientific integrity, and research transparency, with its duty to protect the health of all Americans.”

At The Michael J. Fox Foundation, we believe transparency is critical in research. Open data sharing among the scientific community is a core value of our mission to speed discovery and replication and deepen the public’s trust in findings. As an organization founded by a patient, MJFF takes seriously our obligation to those living with Parkinson’s disease, and we expect nothing less of the federal government. On behalf of everyone living with Parkinson’s, please tell the EPA to abandon this harmful proposal.