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Bill

S 248

An act relating to genetic data privacy

2025-2026 Regular Session Introduced by Wendy Harrison and 1 co-sponsor

The act would establish comprehensive protections for genetic data in Vermont, regulating collection, use, sharing, storage, and disposal to protect privacy.

Read 1st time & referred to Committee on Economic Development, Housing and General Affairs
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Bill Summary · S 248

Overview

Bill: S 248 (Session 2025-2026) – Vermont
Title: An act relating to genetic data privacy
Status: Read 1st time and referred to the Committee on Economic Development, Housing and General Affairs (as of 2026-01-14)
Sponsors: Co-sponsors Wendy Harrison and Rob Plunkett

Purpose and intent

  • The bill aims to establish comprehensive protections for genetic data within Vermont.
  • It seeks to regulate the collection, use, storage, sharing, and disposal of genetic information to protect individuals’ privacy and prevent misuse.
  • By creating clear requirements for entities handling genetic data, the measure targets both private sector actors (e.g., direct-to-consumer genetic testing companies, employers, insurers) and public sector considerations.

Key provisions and changes (anticipated framework)

Note: The specific statutory text is not provided here, but typical elements of genetic data privacy legislation in state law include:

  • Definitions

    • Clarifies what constitutes “genetic data” or “genetic information,” including DNA, genetic test results, and data derived from genetic testing.
    • Distinguishes genetic data from related personal data and identifiers.

  • consent and collection

    • Requires informed consent for collecting genetic data, with specific disclosures about purpose, scope, and potential sharing.
    • Prohibits collection of genetic data beyond the stated purpose or without proper authorization, especially for sensitive uses.

  • use and sharing

    • Limits use of genetic data to the purposes for which it was collected, with restrictions on secondary uses unless additional consent is obtained.
    • Regulates sharing with third parties, contractors, or affiliates, including prohibition or stringent safeguards for transmittal.

  • access, accuracy, and rights

    • Grants individuals rights to access their genetic data held by entities, and to request correction or deletion where applicable.
    • Establishes procedures for responding to access requests within defined timelines.

  • data security and breach notification

    • Sets minimum security standards for storage and transmission of genetic data (e.g., encryption, access controls).
    • Requires prompt notification to affected individuals and possibly state authorities in the event of a data breach involving genetic information.

  • governance and enforcement

    • Creates or designates a regulatory body or assigns authority to an existing Vermont agency to implement and enforce the act.
    • Establishes penalties for violations (e.g., civil penalties, injunctive relief) and potential private rights of action.

  • exemptions

    • May include carve-outs for specific scenarios (e.g., healthcare providers under HIPAA, genetic data used in research with de-identification, law enforcement data under appropriate warrants).

  • preemption and interplay with federal law

    • Addresses how the state law interacts with federal laws (HIPAA, GINA) and other Vermont privacy or health data statutes.

Who would be affected

  • Direct-to-consumer genetic testing companies and other entities that collect or process genetic data.
  • Employers and insurers, depending on how the bill addresses employment and coverage uses of genetic information.
  • Healthcare providers and researchers, particularly if the bill includes roles for data used in clinical or research settings.
  • Individuals in Vermont who would gain new rights regarding access, control, and protections of their genetic data.
  • Covered entities’ vendors and service providers that handle genetic data on behalf of a covered entity.

Procedural and timeline aspects

  • Initial stage: Read 1st time and referred to the Committee on Economic Development, Housing and General Affairs (as of 2026-01-14).
  • Next steps likely include committee hearings, potential amendments, passage by the Vermont Senate, then House consideration, and eventual enactment or veto proceedings, depending on framing and cross-chamber agreement.

Potential impact

  • Strengthened privacy protections for genetic information, reducing risks of discrimination, misuse, and unauthorized sharing.
  • Enhanced consumer awareness and control over genetic data, including rights to access and delete where applicable.
  • Compliance considerations for businesses handling genetic data, potentially driving changes in data governance, security practices, and consent workflows.
  • Possible economic implications for industry players in Vermont, including adherence costs and potential need for privacy-by-design implementations.

If you’d like, I can tailor this summary to focus on specific stakeholders (consumers, employers, providers) or compare with existing Vermont privacy statutes and federal frameworks.

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

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