The United States Environmental Protection Agency (EPA) is the federal government body charged with safeguarding human health and the environment. One of the main ways the agency accomplishes this goal is by regulating the use of chemicals and substances. In 2018, the EPA administrator proposed a rule that would restrict what scientific research the agency could use to make these regulatory decisions. Since then, we have been monitoring this issue and submitted letters and testified on Capitol Hill against this rule. And now, the Parkinson’s community has a critical opportunity to raise its voice on this issue and contact the EPA.
When creating regulations, the EPA looks to studies on the potential health effects of pollutants, pesticides and other materials in the environment. In most of these studies, the scientists conducting the research agree to keep the identity of the participants confidential and protect their personal health information. The proposed rule would require the EPA to consider only those studies in which all the underlying data is publicly available. This would significantly limit the amount of research the agency could use to make regulatory decisions, and expose patient privacy.
There is much research linking commonly used chemicals, such as certain pesticides and solvents, with Parkinson’s disease, and many of these studies involve confidential participant data. Please tell the EPA to abandon the rule and ensure all the best science is available to them.
Taking action is easy. Review the sample comments and submission instructions below to make your voice heard.
HOW TO SUBMIT COMMENTS:
- Visit this website and click the button in the top right corner that says, “Comment Now!”
- Copy this sample text into the comment box (feel free to personalize):
Response to: Strengthening Transparency in Regulatory Science Proposed Rule
Docket ID No. EPA-HQ-OA-2018-0259
As a member of the Parkinson’s disease community, I am very concerned about the impact the proposed rule will have on scientifically based determinations at the EPA. If enacted in its current form, this proposal would limit the science that can be used in EPA decision-making by putting unnecessary restrictions on the kinds of studies that the EPA can consider. This will affect everything from air pollution standards to chemical regulations.
For example, the EPA is currently reviewing the registration of an herbicide called paraquat. Through peer-reviewed and validated research, paraquat is very strongly associated with an increased risk of Parkinson’s disease. Much of the research relies on large, population-based studies, which is the type of research most impacted by this rule. Without the ability to consider this research, the EPA will miss vital information needed to protect public health, thus placing Americans at risk.
Many of the most important studies involving environmental exposures and Parkinson’s disease would be excluded from future determinations for one or more of the following reasons:
- The authors did not previously obtain the needed consents to release the data and would thus be subject to criminal penalty if they did so.
- The data cannot be de-identified appropriately while complying with federal privacy protection laws.
- The cost to de-identify would be very high and many research institutions do not have people on staff who can perform the work needed to do so.
The proposal will put researchers in the difficult position of choosing between protecting privacy and allowing their work to be used by the EPA. Please abandon this troublesome rule.Thank you for the opportunity to submit comments.
[Your name – or omit this part if you want to submit anonymously]
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