While the EPA has argued that patient data can be de-identified, studies have shown that sometimes patients’ identities can be discerned from the information that is included, Dr. Salas says.
This issue is “really important,” says Thomas Burke, PhD, a professor and chair in health risk and society and director of the Risk Sciences and Public Policy Institute at the Johns Hopkins Bloomberg School of Public Health, Baltimore. Dr. Burke, who was not affiliated with the new article, is a former science advisor and head of research and development at the EPA.
“Basically, this rule gives incredible authority to the administrator of the EPA to say what is in and what is out,” Dr. Burke says. What is kicked out “could include enormous amounts of historical data on lead and mercury because it’s virtually impossible to retrieve the original data.”
“Many opponents of regulation have for the good part of the last 50 years tried to pick at the data,” Dr. Burke says. “That started with the cigarette companies denying that tobacco caused lung cancer and has continued all the way through agriculture and chemical producers challenging the effects on the brain of certain pesticides.”
Although transparency should be strived for, it’s not always possible, Dr. Burke says. “This rule would be really harmful to the evidence base and potentially to the protection of health.”
The EPA did not respond to a request for comment.
Reference
- Salas RN, Laden F, Jacobs WB, et al. The U.S. Environmental Protection Agency’s proposed transparency rule threatens health. Ann Intern Med. 2019 Jan 29. doi: 10.7326/M18-2673. [Epub ahead of print]