LETTERS

Health registry bills should be permanently put to rest

Posted

To the Editor:

Rhode Islanders have seen a steady erosion of basic human rights in the areas of medical informed consent and health care choice. The slow but consistent usurpation of core rights is multifaceted, manifesting in a paternalistic statewide practice of healthcare that often disempowers parents. Mothers are particularly dismissed though the human race exists today because of mothers, rather than corruptible governmental health agencies. Despite governmental overreach into personal medical choices, 2018 promises change as an increasing portion of the public speaks up in loud, clear, articulate voices. Rhode Islanders want choice.

This winter, lawmakers have introduced legislation to track the complete medical records of every person in our state. This Rhode Island Department of Health Registry would extend our current tracking system from minors to all adults as well. If HB 7882 and SB 2530 are passed, the state would track all sensitive and private medical information for all people in Rhode Island. The RIDOH would 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 of our children. Furthermore, "parental consent to include children's data is not required." Any tracking system, must 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.

I recently became aware that the RIDOH can alter the religious exemption for vaccines with no legislative or public involvement because the exemption is a regulation rather than law. In New York for example, the DOH added stringent requirements that force parents to submit to long interviews in order to prove that vaccination contradicts their religion. Parents in NY are required to demonstrate their religious sincerity to their educational institution, which has full discretion to reject or accept the religious exemption. Even more shocking, is that parents are often denied a religious exemption because they have vaccinated their children with some vaccines, making vaccination an all or nothing choice.

RI currently does not have such requirements however nothing prohibits the RIDOH from adding them at any point in the future. The only way to protect our inherent right to choice is to restore Rhode Island's philosophical, or personal belief exemption whilst preserving our religious exemption. HB 7686 will protect both. Choice is particularly paramount when one considers that vaccine manufacturers are shielded from liability for injury or death from a vaccine.

For years, a bill has been introduced in the house to restore our philosophical exemption. Time and again, parents of vaccine injured children gather with their stories of injury to speak before lawmakers. Mothers tell of how they took their children to their pediatricians to be vaccinated, then were betrayed by those same doctors when they returned, terrified and seeking help for their injured child, only to be dismissed and disbelieved. After hearing numerous, alarmingly similar stories of vaccine injury told by unconnected women, one must question why we should disbelieve these women, dismiss them, and negate their rights as humans to decline further vaccines for their children. Are they not human beings with inherent rights to bodily integrity? Do their interests not count?

2017 was the year of the #MeToo movement. Voices of all kinds began to speak out with their truths. The time is ripe for parents of all races, genders, cultures, abilities (physical, intellectual and neuro), and backgrounds to claim our inherent rights to privacy, choice and informed consent for ourselves and our children.

Parents who wish to preserve these rights will speak out on Wednesday, March 21st at the RI State House in favor of HB 7686, HB 7576, and HB 7704, which would fortify informed consent and choice for individuals. Additionally, parents intend to rail against HB 7882, an unlawful tracking system that violates the basic tenant of informed consent. All four bills will be heard together by the H.E.W committee on March 21 in room 101 of the RI State House.

Maddalena Cirignotta

Rhode Island Wellness Society

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