Understanding S929's Effects on Nonprofit and Civic Organizations

Nonprofit and Civic Organizations

Understanding S929's Effects on Nonprofit and Civic Organizations

Volunteer-led or grassroots groups that run health drives or community health surveys could now be subject to onerous data processing requirements.

Increased liability for storing participant information, even when health services are peripheral.

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To: Governor Kathy Hochul
Subject: Community Concerns About S929’s Reach and Enforcement

Hi, my name is [First Name] [Last Name], a member of a civic/community-based organization based in New York.

[personal message]

We support the intention of S929 to safeguard New Yorkers’ personal health information. However, we are extremely concerned about how this bill may unintentionally impact grassroots and volunteer-led groups like ours.

Because of how broadly “health information” is defined, our health fairs, surveys, or resource drives may fall under the law—even when health services are only a small part of our programming. Most alarming, the bill introduces significant penalties for violations, despite the absence of clear compliance guidance.

We respectfully ask that you consider:

Carving out exemptions for small, community-based organizations,

Clarifying what kinds of data or activity fall under the law,

Scaling penalties and focusing enforcement on bad actors, not good-faith service providers.

Thank you for your leadership and commitment to protecting both health data and the communities working hard to improve access and equity on the ground.

Sincerely,
[First Name] [Last Name]
[Email]