Thank you to the author for permission to share her op-ed from Providence Journal.
This winter, the Rhode Island Department of Health has introduced legislation via Rhode Island lawmakers to track the complete medical records of every person in our state. This RIDOH Registry would extend our current mandatory tracking system from all minors to all adults as well. House Bill 7882 and Senate Bill 2530 would let the RIDOH legally data mine the personal medical information of every adult and child in Rhode Island.
If H-7882 and S-2530 are passed, the Department of Health will track all sensitive and private medical information for all people in our state. RIDOH will have unrestricted knowledge of medications we are taking, medical procedures we have had, pregnancies, counseling services, mental health, and all medical choices we have made.
There is no opt-out of the registry. If passed, it will be mandatory. According the language of the bills, “Any person may opt out of the disclosure of their immunization status by contacting the department of health.” What about the rest of the registry? This bill violates the right to informed consent as well as privacy. We as human beings, have the right to say “no” to imposed data collection of our personal records.
KIDSNET, our current no-opt-out, mandatory tracking system for all minors in Rhode Island, even collects our children’s Social Security numbers. RIDOH does not list the “participating programs” that have access to the Social Security numbers and private medical records of our children. Furthermore, “parental consent to include children’s data is not required.”
Any tracking system should always respect the human right to informed consent. KIDSNET should be an opt-in-only system that requires a signature in order for data to be collected in the first place. Meanwhile, these draconian adult registry bills should be permanently put to rest.
These alarmingly invasive bills violate our core right to privacy. They additionally raise several deeply concerning questions about the RIDOH:
Why does our state health department want to track our personal data? How does the RIDOH justify legislation that removes the basic tenant of informed consent? Once our data is collected, what recourse would citizens have to protect our information from hackers? How would people ensure that their private medical choices will not be used against them in the future? Does the RIDOH expect taxpayers to fund this massive and costly registry?
In 2017, voices of all kinds began to speak out with their truths. Individuals are joining the collective chorus of outrage as we declare, “Enough is enough.” The time is ripe for Rhode Islanders of all races, genders, cultures, abilities and backgrounds to claim our inherent rights to privacy, choice and informed consent for ourselves and our children.
If we wish to maintain our core freedoms, we must all tell our lawmakers that we do not want to be forced into a mandatory tracking system by our government. House Bill 7882 will be heard by the Health, Education and Welfare Committee in Room 101 of the Rhode Island State House within the next few weeks. Let our representatives know that Rhode Islanders do not wish to be forcefully tracked by the Rhode Island Department of Health or any other government agency.
Maddalena Cirignotta, of Wakefield, writes for the Rhode Island Wellness Society.