NEFAC Cautions Maine CDC on Dangers of Proposed Health Data Disclosure Restrictions

FOR IMMEDIATE RELEASE

CONTACT Justin Silverman | 774.244.2365 | justin@nefirstamendment.org

07252016cdcletterThe New England First Amendment Coalition urged the Maine Center for Disease Control and Prevention today to reconsider proposed policy changes that would severely curtail the right of Maine residents to know the location of disease outbreaks in their communities.

“While these changes are intended to protect the privacy of individuals, they are neither necessary nor helpful to the public’s response to infectious disease outbreaks. Worse, they may jeopardize the safety of those who would otherwise learn of potential risks to their health,” wrote Justin Silverman, NEFAC’s executive director, in a July 25 letter to the center.

The center’s proposal would allow the withholding of information about disease outbreaks that, while not directly identifying individuals, could arguably be combined with other data to result in identification. This data could include the location of the outbreak, such as the name of a school, community center or restaurant.

The proposal comes about a year after the Portland Press Herald sued the agency for records showing the names of schools that experienced a chicken pox outbreak. Maine’s Freedom of Access Act requires these records to be released, but the center withheld them citing the privacy interests of students. The state’s attorney general eventually released the documents following a settlement agreement between the Press Herald and the Department of Health and Human Services, which oversees the CDC.

Under the new policy, Silverman wrote, the following scenario could occur:

Five children are diagnosed with viral meningitis. Meningitis can be very serious and it’s very important for anyone with symptoms of meningitis to see a healthcare provider right away. The children attend a school in a town-owned building with hundreds of other students. When the building isn’t being used for classes, it’s used for community functions that are open to the general public. Because of the number affected (less than six) and the number of children at the school (less than 2,000), the name of the facility is kept confidential. The parents of all other children at the school must now rely on the diligence of town officials to stay informed about preventative measures such as hand-washing and not sharing drinks. Extended family and friends who recently spent time with the inflicted children must rely on the forthcomingness of the parents to obtain information about possible symptoms. Community members using the building after hours have only town gossip, if anything, to explain why the door knobs in the facility were just scrubbed and the rooms thoroughly cleaned.

The policy would also allow the CDC to withhold the location of outbreaks when the number of infected individuals is larger and the pool of those potentially exposed is smaller. If 98 students in a school of 100, for example, were to contract an infectious disease, the center could withhold the name of that school and keep the public uninformed about where the outbreak occurred.

“For Maine residents, this policy change is of great concern considering the health risks involved and the relatively high percentage of residents that remain unvaccinated for various diseases such as the chicken pox,” Silverman wrote. “While our organization understands the need to protect individual privacy in certain situations, this rule is neither a reasonable nor a safe way to do so.”

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NEFAC was formed in 2006 to advance and protect the Five Freedoms of the First Amendment, including the principle of the public’s right to know. We’re a broad-based organization of people who believe in the power of an informed democratic society. Our members include lawyers, journalists, historians, academics and private citizens.

Our coalition is funded through contributions made by those who value the First Amendment and who strive to keep government accountable. Donations can be made here. Major Supporters of NEFAC for this year include: The Providence Journal Charitable Legacy Fund, The Robertson Foundation, The Boston Globe and Boston University.