Many critics of EPA’s proposed rule on “Strengthening Transparency in Regulatory Science” would have people believe that protecting individual privacy and increased public access to research data are mutually exclusive, which is false. EPA should always strive to base its regulations on the best available science—science that is reliable and unbiased—and make the underlying research and data publicly available in ways that protect personal privacy, confidential business information, proprietary interests and intellectual property rights.
The impetus for EPA’s proposed rule is virtually the same as the agency’s policy put into place by Gina McCarthy during the Obama Administration. The goal of the McCarthy plan was to “increase public access to research data while protecting proprietary interests, intellectual property, and personal privacy.” For years, the National Institutes of Health (NIH) has also supported public access to data by clearly stating that “all data should be considered for data sharing,” and noting that “sharing data reinforces open scientific inquiry….”
Take a look for yourself at the similarities between NIH’s goals of data sharing and the EPA’s new data transparency proposal. From NIH:
“Sharing data reinforces open scientific inquiry, encourages diversity of analysis and opinion, promotes new research, makes possible the testing of new or alternative hypotheses and methods of analysis, supports studies on data collection methods and measurement, facilitates the education of new researchers, enables the exploration of topics not envisioned by the initial investigators, and permits the creation of new datasets when data from multiple sources are combined.
“In NIH’s view, all data should be considered for data sharing. Data should be made as widely and freely available as possible while safeguarding the privacy of participants, and protecting confidential and proprietary data.”
And here is what EPA’s proposed rule says:
“Enhancing the transparency and validity of the scientific information relied upon by EPA strengthens the integrity of EPA’s regulatory actions and its obligation to ensure the Agency is not arbitrary in its conclusions. By better informing the public, the Agency [is] enhancing the public’s ability to understand and meaningfully participate in the regulatory process.
“Where the Agency is making data or models publicly available, it shall do so in a fashion that is consistent with law, protects privacy, confidentiality, confidential business information, and is sensitive to national and homeland security.”
Further, NIH clearly explains that such information can be protected while improving transparency:
“The rights and privacy of human subjects who participate in NIH-sponsored research must be protected at all times… Prior to sharing, data should be redacted to strip all identifiers, and effective strategies should be adopted to minimize risks of unauthorized disclosure of personal identifiers. Stripping a dataset of items that could identify individual participants is referred to by several different terms, such as ‘data redaction,’ ‘de-identification of data,’ and anonymizing data…”
In addition, advancements have been made and continue to be refined to protect location privacy, which is often referred to as “geomasking.” These new approaches can protect location privacy while allowing for localized epidemiological analyses—such as the investigation of disease clusters.
It is interesting that some organizations, particularly the Union of Concerned Scientists (UCS), who now criticize EPA’s proposed rule supported the Obama Administration’s efforts to increase public access to scientific data. Following up on that effort, UCS released a 2017 report that listed “transparent decision making” as one of four principles that scientific integrity in federal policymaking should include. UCS describes transparent decision making as:
“Public access to the science itself (allowing for privacy and confidentiality constraints), to the scientists responsible for it, and to information about how it is used to make policy.”
EPA’s proposed rule, like the Obama administration’s directive, clearly states that it contains nothing that “compels the disclosure of any confidential or private information in a manner that violates applicable legal and ethical protections.” So why the change of heart from UCS and others that once supported this important principal of scientific integrity in federal policymaking?