aNewDomain — Not too long ago, I wrote a piece about restricting data access to acceptable uses but now, looking back, I see I should have considered how current federal requirements to protect individuals’ privacy in scientific or medical research might one day be used to impact other policy areas such as environmental regulation.
In that piece I considered the possible unanticipated consequences of giving individuals control over how their personal data might be used in socially useful research. I suggested the following hypothetical where certain types of research might be hobbled by enabling individuals to restrict certain types of data sage:
Imagine, for example, how a gun rights advocate in the U.S. might respond were he or she asked the question, “Do you agree to share your personal social media usage data with the Centers for Disease Control (CDC) so it can perform public health research concerning gun violence in the United States?”
No sooner had I published this piece than news came out of proposed rule making by the U.S. Environmental Protection Agency to restrict the use of certain types of data in the formulation of environmental policies. To wit, see the Washington Post’s Pruitt unveils controversial ‘transparency’ rule limiting what research EPA can use and the AP’s EPA chief signs proposal limiting science used in decisions).
While the stated purpose of the proposed rule appears to be to make environmental regulation more “transparent” by mandating reliance on reproducible and “open” research data, others have suggested a more nefarious goal. Note the following from the AP story:
Top scientists and experts in the environment slammed Pruitt’s new policy, saying it will pit public health research against privacy and the public will lose out.
“I think the underlying motivation here is pernicious,” said Carnegie Mellon University engineering professor M. Granger Morgan, who chaired EPA’s Science Advisory Board under Republican President George W. Bush. He said the policy is an attempt by people who aren’t interested in using science to find the truth “to raise doubts about what at this stage is very clearly established and well-reviewed science.”
All this raises a complex and ironic privacy versus public good debate.
On the one hand, we have research that is dependent on gathering and analyzing individuals’ health data finding a link between environmental hazards and impaired health. On the other, we have a federal agency (established by a Republican administration) charged with using such research to craft federal regulations to help manage the environment.
Making that regulatory process more open and transparent is laudable. But what if proposed regulations actually prevent using data that have shown over time that reducing certain pollutants will improve public health? Doesn’t that actually prevent the federal government from taking actions to prevent the public health?
At the heart of what promises to be a contentious political debate is the fundamental question of how much openness we want and need for our research data.
For as long as open data practices have been promoted to make government collected data more public and accessible, there have also been processes in place to ensure that the rights of the individual to privacy are protected.
Legitimate public health research takes such privacy regulations into account. It would indeed be ironic if protection of individual privacy ends up degrading the process by which environmental regulations are formulated.And that is exactly what some critics of the currently proposed EPA regulations are concerned about.
For aNewDomain, I’m Dennis D. McDonald.