Bill > HR0009

Introduced Session

resolution urging that all State agencies, departments, and offices protect the civil rights, medical confidentiality, and all aspects of personal privacy of Vermonters who have been diagnosed with autism in light of the Secretary of the U.S. Health and Human Services’ recently announced plans to establish an autism research database and other databases related to autism Whereas, the State of Vermont is fully committed to ensuring the enforcement of the rights of individuals with disabilities and the provision of inclusive services and person-centered systems of care, and Whereas, individuals with autism contribute their talents, perspectives, and problem-solving abilities to strengthen Vermont’s workforce; enrich families and communities; and advance innovation in science, technology, the arts, and beyond, and Whereas, autism is a neurological difference, not a disease or an epidemic, and Whereas, the rising autism identification rates, which trained clinicians and health care professionals are documenting, are attributable to improved diagnostic practices, greater awareness of autism, and expanded access to screening tools, and Whereas, individuals with disabilities, including individuals with autism, are too often stigmatized and underestimated, and public policy should never diminish the diverse strengths and potential of these Vermonters, and Whereas, the Secretary of the U.S. Department of Health and Human Services, Robert F. Kennedy Jr., has announced plans to establish a federal research database intended to be used to investigate the root causes of autism, and Whereas, this new database will be a compilation of information derived from individuals’ insurance claims; electronic medical records; and wearable devices, such as smart watches, and Whereas, although this new database is no longer characterized as an “autism registry,” as Secretary Kennedy and National Institutes of Health Director, Dr. Jay Bhattacharya, had previously announced, and despite public promises of personal and medical privacy, significant concerns remain regarding the potential use of Vermonters’ sensitive, personally identifiable health care information without their specific and informed consent, and Whereas, the Governor of the State of Illinois has issued Executive Order 2025-02 (the EO) to ensure that Illinois state officials fully comply with all applicable state and federal legal privacy protections in matters affecting the collection and use of information of persons being tested for, or who have been diagnosed with, autism, or in any database that now or may in the future exist that includes personal information related to autism; that the information not be collected, unless dong so is strictly necessary for authorized purposes; and that the information not be disclosed outside state government except if one of the conditions listed in the EO is met, and Whereas, it is imperative that Vermont officials are similarly vigilant in their protection of personal data being collected for any type of analysis or assessment related to autism, now therefore be it

Elizabeth Burrows (D)*,  Emily Carris-Duncan (D),  Conor Casey (D),  Ela Chapin (D),  Voranus Coffin (R),  Esme Cole (D),  Mari Cordes (D),  Leonora Dodge (D),  David Durfee (D),  Edye Graning (D),  William Greer (D),  Leanne Harple (D),  James Harrison (R),  Troy Headrick (D),  Mary Howard (D),  Bram Kleppner (D),  Emilie Krasnow (D),  Larry Labor (R),  Saudia Lamont (D),  Kate McCann (D),  Jubilee McGill (D),  Mike Mrowicki (D),  Gayle Pezzo (D),  Monique Priestley (D),  Barbara Rachelson (D),  Tom Stevens (D),  Shawn Sweeney (D),  Chloe Tomlinson (D),  Dara Torre (D),  Theresa Wood (D), 

Adopted (on 05/29/2025)

Official Document