This Thursday, the Human Services Committee will consider Senate Bill 2530, a mandatory health tracking system proposed by the Rhode Island Department of Health (RIDOH). The bill would authorize the department to expand KIDSNET, its current tracking database for all minors, to include every single person in Rhode Island. Furthermore, no one may opt out of the registry. S2530 would make the health tracking registry mandatory for everyone. (Companion bill: H7882.)
KIDSNET, tracks a five-page long list of our children’s private information, without parental informed consent. If S2530 passes, all “Rhode Island adult residents would be included in the department of health immunization registry presently maintained for children.” Shockingly, this proposed tracking system has the potential to include “any other relevant information that the director determines appropriate.”
The bill is being sold as a vaccination database, but there is absolutely no wording in the bill that makes it solely vaccinations being tracked.
RIDOH argues that this mandatory tracking system would benefit the public. Perhaps it would. But how does RIDOH justify the subversion of informed consent? If this no opt-out surveillance system stands on its own merit, won’t individuals want to partake? Must RIDOH subvert our informed consent? Any government agency that opposes informed consent, is dangerous.
RIDOH has repeatedly used the term “opt-out” when referring to a clause in the bill that would limit the “disclosure of their immunization status.” To assert that individuals may “op-out” when they cannot, is misleading. RIDOH publicly testified before the House’s Health, Education and Welfare and the Senate’s Health and Human Services committees, claiming that the medical tracking system has an opt-out clause. On both occasions, Chief of the Office of Immunization Trisha Washburn was later obliged to acknowledge that individuals could not actually opt out of the tracking system.
Why did RIDOH seemingly attempt to misrepresent a non-disclosure clause as an opt-out clause? RIDOH is not a worthy steward of our private health data because RIDOH is not transparent with those who would be tracked. The Department of Health has aggressively undermined both components of informed consent by falsely asserting that individuals can opt-out of the registry and by proposing a tracking system that removes all consent in the first place. Most RI residents are unaware their children are already tracked in this database that they do not opt into. It auto-enrolls and has no way to be removed.
While digital data mining threatens human privacy on a global scale, Rhode Islanders are teetering dangerously close to being forced into a statewide medical surveillance system that would afford absolutely no recourse for those who wish to opt out. We must not allow a corruptible government agency to rob the public of informed consent.
Let lawmakers know that we do not want to be tracked by RIDOH. Email or call the Senate’s Health and Human Services Committee members and voice opposition to Senate Bill 2530. Informed consent is a core human right and must never be usurped by corruptible government health agencies, particularly those that forget their role as public servants.
We, the public, do not exist to serve our state health agency, rather our state health agency exists, as least in theory, to serve us. If the health department wants our private medical information, RIDOH must abide by international standards and obtain full, free, and informed consent before collecting our data in the first place.
Lena Cirignotta writes on behalf of Health Choice Rhode Island.