Comparing HB 4897 → HB 3436 — Genetic Privacy Act

Struck = only in HB 4897 · added = only in HB 3436.

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*LRB10417552BDA30980b* HB4897 104TH GENERAL ASSEMBLY State of Illinois and 2026 HB4897 by Rep.
WEST VIRGINIA LEGISLATURE REGULAR SESSION Introduced House Bill 3436 By Delegates Kimble, Anders, T.
Nabeela Syed SYNOPSIS AS INTRODUCED:
Howell, Mazzocchi, Worrell, Phillips, Kump, Butler, and Funkhouser [Introduced March 17, 2025;
ILCS 513/20 Amends the Genetic Information Privacy Act.
referred to the Committee on the Judiciary] Intr HB 2025R3754 A BILL to amend the Code of West Virginia, 1931, as amended, by adding a new article, designated §16-5EE-1, §16-5EE-2, §16-5EE-3, §16-5EE-4, §16-5EE-5, and §16-5EE-6, relating to biometric privacy, creating the Genetic Information Privacy Act, requiring an entity to provide consumer information regarding the collection, use, and disclosure of genetic data, providing for limitations and exclusions, providing for enforcement authority, and providing definitions.
Removes language exempting insurers that are issuing a long-term care policy from specified provisions.
Be it enacted by the Legislature of West Virginia:
Provides that, with regard to any policy, contract, or plan offered, entered into, issued, amended, or renewed on or after January 1, by a health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State, a health insurer, life insurer, disability insurer, or long-term care insurer may not:
ARTICLE 5EE.
(1) cancel, limit, or deny coverage or establish differentials in premium rates based on a person's genetic information;
GENETIC INFROMATION PRIVACY ACT.
or (2) require or solicit an individual's genetic information, use an individual's genetic test results, or consider an individual's decisions or actions relating to genetic information or a genetic test in any manner for any insurance purpose.
§16-5EE-1.
Provides that the provisions may not be construed as:
Short title.
(1) preventing a life insurer, disability insurer, or long-term care insurer from accessing an individual's medical record as part of an application;
This article shall be known as the "Genetic Information Privacy Act." §16-5EE-2.
or (2) prohibiting a life insurer, disability insurer, or long-term care insurer from considering a clinical diagnosis, such as a manifest disease or disorder, included in an individual's medical record for insurance purposes to the extent otherwise allowable by law.
Definitions.
Effective July 1, 2026.
As used in this article, unless the context clearly indicates otherwise, the following definitions apply:
LRB104 17552 BDA 30980 b A BILL FOR HB4897 LRB104 17552 BDA 30980 b AN ACT concerning health.
(1) "Biological sample" means any human material known to contain DNA, including tissue, blood, urine, or saliva.
Be it enacted by the People of the State of Illinois, represented in the General Assembly:
(2) "Consumer" means an individual who is a resident of this state.
Section 5.
(3) "DNA" means deoxyribonucleic acid.
The Genetic Information Privacy Act is amended by changing Section 20 as follows:
(4) "Entity" means a partnership, corporation, association, or public or private organization of any character that:
(410 ILCS 513/20) Sec.
(A) offers consumer genetic testing products or services directly to a consumer;
20.
or (B) collects, uses, or analyzes genetic data.
Use of genetic testing information for insurance purposes.
(5) "Express consent" means a consumer's affirmative response to a clear, meaningful, and prominent notice regarding the collection, use, or disclosure of genetic data for a specific purpose.
(a) An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance.
(6) (A) "Genetic data" means any data, regardless of format, concerning a consumer's genetic characteristics.
Except as provided in subsection (c), an insurer that receives information derived from genetic testing, regardless of the source of that information, may not use the information for a nontherapeutic purpose as it relates to a policy of accident and health insurance.
Intr HB 2025R3754 (B) The term includes but is not limited to:
(b) An insurer shall not use or disclose protected health information that is genetic information for underwriting purposes.
(i) Raw sequence data that result from sequencing all or a portion of a consumer's extracted DNA;
For purposes of this Section, "underwriting purposes" means, with respect to an insurer:
(ii) Genotypic and phenotypic information obtained from analyzing a consumer's raw sequence data;
(1) rules for, or determination of, eligibility (including enrollment and continued eligibility) for, or determination of, benefits under the plan, coverage, or HB4897 - 2 - LRB104 17552 BDA 30980 b policy (including changes in deductibles or other cost-sharing mechanisms in return for activities such as completing a health risk assessment or participating in a wellness program);
and (iii) Self-reported health information regarding a consumer's health conditions that the consumer provides to an entity that the entity:
(2) the computation of premium or contribution amounts under the plan, coverage, or policy (including discounts, rebates, payments in kind, or other premium differential mechanisms in return for activities, such as completing a health risk assessment or participating in a wellness program);
(I) Uses for scientific research or product development;
(3) the application of any pre-existing condition exclusion under the plan, coverage, or policy;
and (II) Analyzes in connection with the consumer's raw sequence data.
and (4) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.
(7) "Genetic testing" means:
"Underwriting purposes" does not include determinations of medical appropriateness where an individual seeks a benefit under the plan, coverage, or policy.
(A) A laboratory test of a consumer's complete DNA, regions of DNA, chromosomes, genes, or gene products to determine the presence of genetic characteristics of a consumer;
This subsection (b) does not apply to insurers that are issuing a long-term care policy, excluding a nursing home fixed indemnity plan.
or (B) An interpretation of a consumer's genetic data.
(c) An insurer may consider the results of genetic testing in connection with a policy of accident and health insurance if the individual voluntarily submits the results and the results are favorable to the individual.
(8) "Governmental agency" means an executive, legislative, or judicial agency, department, board, commission, authority, institution, or instrumentality of the federal government or of a state or of a county, municipality, or other political subdivision of a state.
(d) An insurer that possesses information derived from HB4897 - 3 - LRB104 17552 BDA 30980 b genetic testing may not release the information to a third party, except as specified in this Act.
(9) "Person" means an individual, partnership, corporation, association, business, business trust, or legal representative of an organization.
(e) A company providing direct-to-consumer commercial genetic testing is prohibited from sharing any genetic test information or other personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer.
(10) "Processor" means a person that processes genetic data on behalf of an entity pursuant to a contract between the entity and the processor that prohibits the processor from retaining, using, or disclosing the genetic data, or any information regarding the identity of the consumer, including whether that consumer has solicited or received genetic testing, as applicable, for any purpose other than for the specific purpose of performing the services specified in the contract.
(f) A health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State may not:
(11) "Third party" means a person other than the consumer, entity, or processor.
(1) cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information collected, used, or stored for health care treatment;
§16-5EE-3.
or (2) require or solicit an individual's genetic information, use an individual's genetic test results, or consider an individual's decisions or actions relating to genetic information or a genetic test in any manner for any insurance purpose.
Exceptions.
This subsection applies to any policy, contract, or plan that is offered, entered into, issued, amended, or renewed on or after January 1, 2027 by a health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State.
Intr HB 2025R3754 (a) Protected health information that is collected by a covered entity or business associate as those terms are defined in 45 CFR, parts 160 and 164, if separate informed consent related to the collection, use, and dissemination of genetic data is obtained from the consumer, parent, guardian, or power of attorney, and the covered entity or business associate follows the policies under this article;
(g) Nothing in this Section may be construed as:
(b) An entity when it is engaged only in collecting, using, or analyzing genetic data or biological samples in the context of research as defined in 45 CFR 164.501 conducted with the express consent of an individual and in accordance with:
(1) preventing a life insurer, disability insurer, or HB4897 - 4 - LRB104 17552 BDA 30980 b long-term care insurer from accessing an individual's medical record as part of an application;
(i) The federal policy for the protection of human research subjects under 45 CFR, part 46, the good clinical practice guideline issued by the international council for harmonization of technical requirements for pharmaceuticals for human use;
or (2) prohibiting a life insurer, disability insurer, or long-term care insurer from considering a clinical diagnosis, such as a manifest disease or disorder, included in an individual's medical record for insurance purposes to the extent otherwise allowable by law.
or (ii) The United States food and drug administration policy for the protection of human subjects under 21 CFR, parts 50 and 56;
(Source:
or (c) Uses by a governmental agency.
P.A.
(d) Beginning January 1, 2027, any collection, storage, use, or dissemination of genetic data by a governmental agency must be performed in accordance with a specific state law or executed through a search warrant.
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101-132, eff.
§16-5EE-4.
1-1-20.) Section 99.
Consumer genetic data;
Effective date.
privacy notice;
This Act takes effect July 1, 2026.
consent;
access;
deletion;
destruction.
To safeguard the privacy, confidentiality, security, and integrity of a consumer's genetic data, an entity shall:
(1) Provide clear and complete information regarding the entity's policies and procedures for the collection, use, or disclosure of genetic data by making available to a consumer:
(A) A high-level privacy policy overview that includes basic, essential information about the entity's collection, use, or disclosure of genetic data;
and (B) A prominent, publicly available privacy notice that includes, at a minimum, information about the entity's data collection, consent, use, access, disclosure, transfer, security, and retention Intr HB 2025R3754 and deletion practices for genetic data;
(2) Obtain initial express consent from a consumer, parent, guardian, or power of attorney for the collection, use, or disclosure of the consumer's genetic data that:
(A) Clearly describes the entity's use of the genetic data that the entity collects through the entity's genetic testing product or service;
(B) Specifies the categories of individuals within the entity that have access to test results;
and (C) Specifies how the entity may share the genetic data;
(4) If the entity engages in any of the following, obtain a consumer's:
(A) Separate express consent for:
(i) The transfer or disclosure of the consumer's genetic data or biological sample to any third party other than the entity's processors, including the name of the third party to which the consumer's genetic data or biological sample will be transferred or disclosed with the consumer's express consent;
(ii) The use of genetic data beyond the primary purpose of the entity's genetic testing product or service and inherent contextual uses;
or (iii) The entity's retention of any biological sample provided by the consumer following the entity's completion of the initial testing service requested by the consumer;
(B) Informed express consent for transfer or disclosure of the consumer's genetic data to third party persons for:
(i) Research purposes;
or (ii) Research conducted under the control of the entity for the purpose of publication or generalizable knowledge;
and (C) Express consent for:
(i) Marketing to a consumer based on the consumer's genetic data;
(ii) Marketing by a third-party person to a consumer based on the consumer having Intr HB 2025R3754 ordered or purchased a genetic testing product or service.
Marketing does not include the provision of customized content or offers on the websites or through the applications or services provided by the entity with the first-party relationship to the consumer;
or (iii) Sale or other valuable consideration of the consumer's genetic data.
(5) Comply with the provisions of §46A-7-101 et seq.
of this code requiring a valid legal process for disclosing genetic data to law enforcement or any other government agency without a consumer's express consent;
(6) Develop, implement, and maintain a comprehensive security program to protect a consumer's genetic data against unauthorized access, use, or disclosure;
and (A) Provide a process for a consumer to:
(i) Access the consumer's genetic data;
(ii) Delete the consumer's genetic data;
(iii) Revoke any consent provided by the consumer;
and (iv) Request and obtain the destruction of the consumer's biological sample.
(7) Genetic data and biometric samples of West Virginia residents collected in the state may not be stored within the territorial boundaries of any country currently sanctioned in any way by the United States office of foreign asset control or designated as a foreign adversary under 15 CFR 7.4(a).
Genetic data or biometric data of West Virginia residents collected in the state may only be transferred or stored outside the United States with the consent of the resident.
§16-5EE-5.
Disclosure;
when prohibited;
when express consent required.
(a) The disclosure of genetic data pursuant to this article must comply with all state and federal laws for the protection of privacy and security.
(b) Notwithstanding any other provisions in §16-5EE-4 of this code, an entity may not disclose a consumer's genetic data to any entity offering health insurance, life insurance, or long- term care insurance, or to any employer of the consumer without the consumer's express consent.
§16-5EE-6.
Enforcement.
Intr HB 2025R3754 (a) The Attorney General has the sole authority to enforce this article.
(b) The Attorney General may initiate a civil enforcement action against a person for violation of this article.
(c) In an action to enforce this article, the Attorney General may recover:
(1) Actual damages to the consumer;
(2) Costs;
(3) Reasonable attorney fees;
and (4) $2,500 for each violation of §16-5EE-4 of this code.
NOTE:
The purpose of this bill is to create the Genetic Information Privacy Act, require an entity to provide consumer information regarding the collection, use, and disclosure of genetic data, provide for limitations and exclusions, provide for enforcement authority, and provide definitions.
Strike-throughs indicate language that would be stricken from a heading or the present law and underscoring indicates new language that would be added.