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HB 5179

PRIVACY-NEURAL DATA-DEVICES

104th Regular Session Introduced by Anne Stava

The act requires nonmedical users of neural devices to disclose terms, obtain explicit consent for neural data, and delete data upon withdrawal, with enforcement and penalties.

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Bill Summary · HB 5179

Summary of HB5179 (104th General Assembly, Illinois)

Purpose and intent

  • Establishes the Protection of Neural Data Act to regulate the use, storage, and transfer of neural data by nonmedical entities that use or facilitate neural devices.
  • Aims to ensure informed disclosures, require consent for data handling, and provide enforcement mechanisms and remedies for violations.

Key provisions and changes

  • Definitions

    • Covered entity: A person that uses or facilitates a neural device to monitor, record, analyze, or manipulate neural data. Excludes:
    • Licensed Illinois health care professionals using neural devices for medical purposes.
    • Licensed health care facilities.
    • Neural data: Information about activity of the central or peripheral nervous system that can be monitored, recorded, analyzed, or manipulated by a neural device.
    • Neural device: Any device that uses electronic, optical, magnetic, nanophysical, acoustical, or mechanical systems and can modify the nervous system’s response.

  • Disclosure requirements (Section 10)

    • Before using a neural device, covered entities must:
    • Publicly disclose on their website all user agreements, privacy terms, and consent-related documents.
    • Inform individuals, in clear terms, of:
      • Health and safety risks of the device.
      • Whether the device collects data beyond what is necessary for its described function.
      • That neural data may not be stored or retained without consent, and may not be transferred to third parties without consent.
      • How the entity safeguards neural data privacy.

  • Consent requirements (Section 15)

    • Covered entities may not store, retain, or transfer neural data without the individual's consent.
    • Individuals may retract consent at any time (via electronic, telephonic, or written notification).
    • Upon retraction, the entity must:
    • Immediately cancel and deactivate the individual's account and block future transfers.
    • Within 30 days:
      • Delete all neural data in the entity’s possession in a way that renders it unrecoverable.
      • Inform all third parties to whom data was transferred to delete the data; require those third parties to comply.

Enforcement, remedies, and penalties

  • Enforcement: The Illinois Attorney General and State's Attorneys may enforce the Act.
  • Penalties:
    • Violation generally constitutes a Class 1 misdemeanor.
    • If a violation is part of a pattern of noncompliance, a court may impose a fine of up to $50,000.
  • Civil remedies:
    • Affected individuals may file civil actions for damages.
    • There is a presumption of at least $10,000 in damages if the court finds that neural data was transferred to a third party in violation of the Act.

Procedures and administrative rules

  • Rules: The Attorney General may adopt rules necessary to implement the Act.

Potential impact

  • Gives individuals clearer rights and control over neural data, including explicit consent mechanisms, disclosure duties, and withdrawal processes.
  • Creates financial and operational incentives for covered entities to limit data collection, ensure secure handling, and avoid unauthorized transfers.
  • Establishes state-level enforcement and a private right of action with specified damages, potentially increasing compliance scrutiny for nonmedical organizations involved with neural devices.
  • Excludes traditional medical settings and licensed health care facilities from the “covered entity” definition, focusing the Act on nonmedical users and facilitators of neural devices.

Note: As introduced, the bill outlines definitions, disclosure and consent obligations, retention and deletion timelines, and enforcement mechanisms, but does not specify funding or implementational details beyond general rulemaking authority for the Attorney General.

Compiled from official sources — confirm details with the bill’s official record.

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