Vermont SR 15: Senate 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

Bill Text

VTLEG#383932 v.1
State of Vermont
Senate Chamber
Montpelier, Vermont
Senate Resolution
Offered by Senators Vyhovsky, Baruth, Beck, Bongartz, Brennan, Brock, Chittenden, Clarkson, Collamore, Cummings,
Douglass, Gulick, Hardy, Hart, Harrison, Hashim, Heffernan, Ingalls, Lyons, Major, Mattos, Norris, Perchlik, Plunkett, Ram
Hinsdale, Watson, Westman, White and Williams,
S.R. 15. Senate resolution relating to 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
Resolved by the Senate:
That the Senate of the State of Vermont urges that all State agencies, departments, and offices do everything in their
power to protect the civil rights, medical confidentiality, and all aspects of personal privacy of Vermonters who have been
diagnosed with autism, and be it further
Resolved: That the Secretary of the Senate be directed to send a copy of this resolution to the U.S. Secretary of Health
and Human Services, the Director of the National Institutes of Health, the Vermont Congressional Delegation, the Vermont
Secretary of Human Services, the Vermont Human Rights Commission, and the Governor.