Government should protect private information to defend public health

When our private information is used in any kind of research, we should be able to trust that such information will be kept confidential. However, the Environmental Protection Agency is attempting to make this private information, including medical data, subject to transparency.

The Environmental Protection Agency is considering a supplement to its proposed rule for transparency in regulatory science. The proposed rule was originally limited to dose response data and models but now applies to all data and models. The agency claims its rule is about strengthening transparency and public access to information. However, with this case, such interests would come at many costs to our health and privacy. The agency needs to exempt private data from the proposed rule.

The Environmental Protection Agency first excluded personal information from the scope of its proposed rule. But the agency now intends to make worker, medical, and similar data subject to this rule. This would include instances where the disclosure of such information would constitute the “clearly unwarranted invasion of personal privacy,” like cases of allowing the identity of an individual in a study to then be made public.

The Environmental Protection Agency is proposing to restrict its use of data and models used when making significant regulatory decisions or finalizing key scientific information to those that are publicly available. Underlying this supplement to the proposed rule is the implication that the agency can make models and data publicly available. The purpose, the agency says, is to enable independent validation of studies.

Plenty of details are unclear about this proposed rule. The Environmental Protection Agency is running a pilot study and developing repositories to safeguard private information, but the means of protecting this data must be in place before steps are taken to make it publicly available. 

The Environmental Protection Agency proposes two options for restricting the data and models. First, it will only utilize data and models with private information when there is tiered access to such information that is limited. The second option is to provide greater consideration to data and models that are public. The agency will hand this weight to data and models with private information if restricted access is available. However, the agency again neglects to describe how it will protect this information.

The Environmental Protection Agency rule applies to private data without a solution for how to keep that data private. There is no delineation of who would have access to this information. We are essentially told that access is on a need to know basis without a clear explanation of who would need to know. We are supposed to assume that the agency will somehow figure that out. That is why it is conducting a pilot study and an investigation for such methods. All that has to happen, however, before there comes a final rule to make data and models with all this information public.

This wait and see attitude is a problem. Researchers should not be forced to decide between whether they want their work to be considered by the Environmental Protection Agency or whether they want to safeguard the privacy of those in their studies. Individuals in studies need to trust that their personal information will not be shared. This includes cases where disclosure may be accidental. The agency does not bother to say how it will avoid this or other types of disclosures from happening.

The Environmental Protection Agency does not make rules in a vacuum. The rules have to be backed by research. If the agency ignores research because the findings cannot be made public due to private information, then it undermines the ability to take action to clean the air we breathe, the water we drink, and the chemicals that we encounter every moment of our days. All this ultimately would jeopardize our health.

The Environmental Protection Agency could exempt personal information from this proposed rule but has chosen not to do so. It has instead chosen to grant exemptions on a case by case basis. This leaves our private health data subject to the whims of the government. Rather than exempting this type of personal information on a case by case basis, the agency needs to exempt all such data from this new rule about transparency.

Michele Okoh is an attorney and senior lecturing fellow at Duke University Environmental Law and Policy Clinic based at Duke University Law School.