The Environmental Protection Agency (EPA) recently finalized a rule to strengthen transparency in the science underlying regulatory health and safety roles. This transparency refers to making data from epidemiological studies available for evaluation by independent observers, since the studies often serve as the foundation for regulations that address exposure to substances that can affect health. Yet some scientists think this Trump-era rule should be repealed. These critics worry that people’s confidential personal health data may be revealed and as a result, deter people from participating in future studies. But, beyond regulations, access to personal health data is essential for us to improve public health as we move toward precision medicine.
This EPA rule addresses the so-called “secret science” underlying some regulations that are both the most expensive, but also allegedly the most beneficial in American history. Those regulations, for example, link particulate matter (PM) like different types of dust to premature deaths. These linkages are referred to as dose-response data, which estimate how much health harm results from various levels of exposure to a hazard like PM. The costs (primarily equipment to control PM) are estimated to be in billions of dollars, but the EPA claims that the rules save thousands of lives. One estimate shows $32 billion in benefits over two decades at a cost of about $14 billion, though others dispute the benefits and question the science behind the rules.
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