New York State Legislature Passes Comprehensive Health Privacy Law
6 Minute Read
January 28, 2025
On January 21, 2025, the New York state legislature passed Senate Bill (S-929), which provides for the protection of health data. The bill is pending NY Governor Kathy Hochul’s signature.
Key aspects of the bill include:
- Broad Applicability:
- Applies to “individuals,” not solely “consumers”: The bill does not limit its application only to consumers acting in their individual or household context (and not in a professional or employment context). Instead, it applies to all “individuals” (which term is not defined).
- Broad definition of “regulated entity”: A regulated entity is subject to the law if it (a) is located in New York and controls the processing of regulated health information or (b) controls the processing of regulated health information of an individual who is either (i) a New York resident or (ii) physically present in New York. Notably, unlike other comprehensive state privacy laws, there is no threshold (revenue or processing volume) that must be met to qualify as a regulated entity.
- Broad definition of “regulated health information”: The term is defined as “any information that is reasonably linkable to an individual, or a device, and is collected or processed in connection with the physical or mental health of an individual,” including location or payment information. Importantly, the term also includes any “inference drawn or derived about an individual’s physical or mental health that is reasonably linkable to an individual, or a device.” Deidentified data (that meets the bill’s requirements) is exempt from the law’s application.
- Processing Restrictions: The bill requires regulated entities to process regulated health information only: (1) with the “valid authorization” of an individual or (2) when the processing is “strictly necessary” to (a) provide a specific product or service requested by the individual, (b) conduct internal business operations, (c) protect against illegal activity, (d) detect, respond to or prevent security incidents or threats, (e) protect the vital interests of an individual, (f) detect, respond to or defend legal claims, or (g) comply with legal obligations.
- Valid authorization: For an individual’s authorization to be valid, a regulated entity must satisfy 11 enumerated conditions set forth in the law. Notable requirements include:
- A request for authorization must be made at least 24 hours after an individual creates an account with the regulated entity or first uses the regulated entity’s products or services.
- A request for authorization must be specific to the regulated entity’s processing activities and provide individuals with the ability to authorize certain activities while declining to authorize others.
- Regulated entities provide, in a “conspicuous and easily accessible place within the account settings,” a list of all processing activities for which the individual has provided authorization and allow the individual to revoke authorization for each processing activity “in the same place with one motion or action.”
- A regulated entity must disclose the names “where readily available” or categories of both service providers and third parties to whom information may be disclosed and the purposes for such disclosure, including the circumstances under which the entity may disclose such data to law enforcement (particularly relevant with respect to reproductive health data post-Dobbs).
- A regulated entity must disclose whether it receives any monetary or other valuable consideration in connection with processing the individual’s regulated health information (not limited to the “sale” of information).
- Regulated entities cannot condition the quality of a consumer’s experience of the entity’s products or services on an individual providing their valid authorization.
- Authorizations expire within a year of being provided, so regulated entities will need to obtain fresh authorization on at least an annual basis.
- A regulated entity must publish on its website a sample authorization form.
- Notice: Regulated entities that process regulated health information pursuant to a permissible purpose must provide clear and conspicuous notice of its processing activities (as set forth in the bill).
- Prohibition on Sale: The law prohibits the “sale” of regulated health information without an individual’s authorization. Similar to other comprehensive privacy laws, “sale” is broadly defined to mean the sharing of data for “monetary or other valuable consideration.”
- Valid authorization: For an individual’s authorization to be valid, a regulated entity must satisfy 11 enumerated conditions set forth in the law. Notable requirements include:
- Individual Rights: The bill provides the right to access and delete regulated health information.
- Individual Communications: The bill requires regulated entities to communicate with individuals using plain, straightforward language that avoids “technical or legal jargon” and through an interface individuals regularly use in connection with the regulated entity’s product or service. Communications also must be reasonably accessible to individuals with disabilities and available in the languages in which the regulated entity provides information via its websites and services (and for communications with individuals, in the language the individual uses).
- Security and Data Retention: The law requires regulated entities to implement reasonable administrative, technical and physical safeguards to protect regulated health information. Notably, the bill also requires regulated entities to securely dispose of regulated health information no later than 60 days after it is not necessary for the entity to maintain the data for a permissible purpose or for which an individual provided valid authorization. Regulated entities also must publish a data retention schedule that sets forth these requirements.
- Exemptions: Covered entities and protected health information subject to HIPAA and clinical trial data subject to the Common Rule are exempt from the bill’s requirements.
- Enforcement: The bill gives the New York Attorney General the authority to enforce its provisions. Under the law, the Attorney General will be able to bring actions or special proceedings on behalf of the people of the state of New York to seek injunctive relief, restitution, disgorgement, civil fines of up to the greater of $15,000 per violation or 20% of the revenue the covered entity obtained from New York consumers in the past fiscal year, and any other relief a court may deem proper.
The bill would take effect one year after it is signed into law. The bill authorizes the creation of implementing regulations immediately following its passage. The bill is now awaiting NY Governor Kathy Hochul’s signature.
Tags: Consent, Health Data, Legislation, New York, Opt-In Consent, Personal Data, Personal Information
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