Bill > A02516

This bill authorizes the New York State Department of Health to establish a voluntary screening and counseling program for three genetic disorders: familial dysautonomia, Canavan's disease, and Tay-Sachs disease. The program will primarily operate through existing health programs and will prioritize providing services to blood relatives of known victims of these disorders and high-risk population groups, especially those entering childbearing years. The department can provide grants and contracts to public and nonprofit entities to support these efforts. Participation in the program is completely voluntary and will not affect a person's eligibility for other services. Importantly, all test results, medical records, and related information will be kept strictly confidential and cannot be used as evidence in legal proceedings, with limited exceptions such as patient consent, statistical data compilation, or court orders with demonstrated good cause. By July 1, 2027, the commissioner is required to submit a report to state legislative leaders detailing the program's administration and recommending any necessary legislative changes. The bill will take effect 180 days after becoming law, allowing time for necessary regulatory preparations.

Budget and Finance, Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/A2516