Bill > S07857

This bill authorizes the New York State Department of Health to establish a voluntary screening and counseling program for three genetic conditions: familial dysautonomia, Canavan's disease, and Tay-Sachs disease. The program will prioritize providing services to blood relatives of known victims of these conditions and high-risk population groups, particularly those entering childbearing years. The department can provide grants and contracts to public and nonprofit entities to implement these screening programs, with a focus on areas with the highest need. Participation in the program is entirely voluntary and will not affect an individual'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 a court order with demonstrated good cause. The bill requires the commissioner to submit a report on the program's administration by July 1, 2027, and includes recommendations for potential future legislation. The act will take effect 180 days after becoming law.

Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/S7857