Bill S.76, introduced by Senator Lyons, proposes significant changes to health equity data reporting and the disclosure requirements for cancer and amyotrophic lateral sclerosis registries in Vermont. The bill aims to reduce the frequency of health equity data reports submitted by the Department of Health from annually to every three years, starting in 2028. Additionally, it amends the disclosure provisions for the cancer registry, requiring the Commissioner to obtain assurances that identifying information will be kept confidential and privileged as required by law, rather than a written agreement. The bill also updates the requirements for researchers to obtain approval from an institutional review board or privacy board instead of an academic committee for the protection of human subjects.

Furthermore, the bill includes similar amendments for the amyotrophic lateral sclerosis registry, ensuring that the confidentiality of identifying information is maintained while allowing for data sharing agreements with researchers and registries. The Commissioner is tasked with disclosing only the minimum necessary information for research purposes. The act is set to take effect on July 1, 2025, if passed.

Statutes affected:
As Introduced: 18-253, 18-155, 18-174