The ACLU of Maine is committed to the public's right to access government records, having litigated the issue in state and federal court on many occasions over the decades. We are just as committed to the right to privacy for individuals in our state, especially privacy about sensitive medical information. People do not relinquish their right to privacy because they have been tested for, or have contracted, a deadly disease, and they do not relinquish their right to privacy because their personal medical records have been turned over to the state as required by law. In cases involving the right to access public health data, courts have consistently found the government needs to strike an appropriate balance between the public's right to know and the right of patients to keep personal medical information private. The best way to strike that balance is to ensure that data are de-personalized and aggregated, and that they are not released at a unit level where reverse-identification would be possible. For some data, the appropriate unit level may be at the county level, while for other data such as data about race (which the ACLU of Maine has requested) anything more granular than state-level data may allow for patients to be unwittingly revealed. We urge the Maine Department of Health and Human Services (DHHS) to continue to review and produce data to keep the public informed, while maintaining its scrupulous concern for the medical privacy of Maine people.
The following can be attributed to Alison Beyea, executive director of the ACLU of Maine:
"When it comes to health records, the government must take special care before releasing information to the public that could inadvertently reveal individual identities. In many Maine communities, disclosing identifiable health information is as good as slapping a target on someone's back. Given the dangers faced by vulnerable communities, especially communities of color, the government has a special obligation to protect individual privacy from such disclosure."