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NY A02516
Bill
Status
1/17/2025
Primary Sponsor
Jeffrey Dinowitz
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AI Summary
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Establishes a voluntary screening and counseling program within the Department of Health for familial dysautonomia, Canavan's disease, and Tay-Sachs disease, operating primarily through existing health programs
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Authorizes the commissioner to make grants and enter contracts with public and nonprofit private entities to operate screening programs, with priority given to services for blood relatives of disease victims and high-risk population groups entering childbearing years
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Requires all test results, medical records, and screening information to be kept confidential and inadmissible as evidence in court proceedings, with limited exceptions for patient consent, anonymized statistical data, or court orders showing good cause
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Mandates a report on program administration to the governor and legislative leaders by July 1, 2027, including recommendations for additional legislation
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Takes effect 180 days after becoming law, with immediate authorization to develop implementing regulations
Legislative Description
Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling and to provide grants and to enter into contracts with public and non-profit private entities to assist in such program; provides that participation in such program shall be voluntary and all information shall be confidential.
Last Action
referred to ways and means
1/7/2026