Who owns our personal medical information, government or individuals?

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Rhode Island Department of Health has once again introduced legislation via Rhode Island lawmakers to legally data mine every person in our state. RIDOH proposes to expand KIDSNET, a mandatory medical tracking system for all minors, to RICAIR (Rhode Island Children and Adult Immunization Registry). Bills H5541 and S676 would allow RIDOH to automatically enroll every person living in Rhode Island into one centralized medical tracking database, regardless of knowledge or consent.

Through KIDSNET, the Department of Health tracks six pages worth of private information, including chromosomal and genetic testing, mothers’ marital status at birth, mothers’ education and even section 8 housing information.

RIDOH insists upon an opt-out system, which places all onus on the public while removing informed consent. Unlike KIDSNET, which is mandatory, RICAIR would allow for a weak opt-out that serves as a burdensome deterrent. According to RIDOH, in order to simply restrict third party access to our families medical information we must, Contact the HEALTH Information Line...The Help Desk staff will send the form to the child’s doctor or to a KIDSNET affiliated office. The parent/guardian will then go to that office and sign the form with a staff member serving as a witness. The office will mail the form back to the Department of Health. KIDSNET staff will make the appropriate changes to the child record.

This is a deterrent. The Department of Health does not even confirm that they have restricted third party access to our children’s data. No language in the bills would compel RIDOH to expunge the information of those who opt out of RICAIR. Regardless of consent, RIDOH would be able to forcibly collect private medical information in a centralized government database and retain that information indefinitely. Outrageously, we do not even have direct access to our own families KIDSNET information. If you need to have your child’s record printed or if you would like to see what is in it, contact your child’s doctor.

We must ask ourselves, does the public exist to serve the Department of Health, or does the Department of Health exist to serve the public? Who owns our personal medical information, government or individuals? Why are some Rhode Island lawmakers proposing legislation to violate our privacy and informed consent? Who do these lawmakers actually serve? And most importantly, why does the Rhode Island Department of Health want to violate our informed consent?

ACLU poignantly supports our right to know and warns against future uses of our private data…DOH will be able to share the information with data partners for a variety of unpublicized uses. Again, this is something that patients should be made aware of up front, along with an opportunity for them to know who those partners are and the purposes for which the information is being used.

RICAIR may seem convenient to some, who would prefer a centralized collection of medical data. An opt-in

registry would offer a service rather than a universally imposed medical surveillance. If the Rhode Island Department of Health sincerely wishes to provide a service to the public, RIDOH should offer this centralized data collection with full, free and informed consent.

Those unwilling to relinquish our private medical information must tell our lawmakers that we do not consent to imposed medical surveillance. RIDOH’s dogged attempts to violate privacy and informed consent are the very reason why we must never allow government to usurp core human rights. Maddalena Cirignotta writes for the Rhode Island Wellness Society.

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