Comparing HB 4897 → HB 1179 — An Act providing for privacy, transparency and compensati...

Struck = only in HB 4897 · added = only in HB 1179.

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*LRB10417552BDA30980b* HB4897 104TH GENERAL ASSEMBLY State of Illinois and 2026 HB4897 by Rep.
PRINTER'S NO.
Nabeela Syed SYNOPSIS AS INTRODUCED:
1316 THE GENERAL ASSEMBLY OF PENNSYLVANIA HOUSE BILL Session of No.
ILCS 513/20 Amends the Genetic Information Privacy Act.
1179 2025 INTRODUCED BY KINKEAD, MUNROE, ISAACSON, MERSKI, MADDEN, HILL- EVANS, RABB, HOWARD, PIELLI, HANBIDGE, SANCHEZ, SHUSTERMAN, CIRESI, CEPEDA-FREYTIZ, RIVERA, CERRATO, GREEN, WARREN AND SAMUELSON, APRIL 9, 2025 REFERRED TO COMMITTEE ON CONSUMER PROTECTION, TECHNOLOGY AND UTILITIES, APRIL 9, 2025 AN ACT Providing for privacy, transparency and compensation regarding the disclosure of information collected by genetic material testing entities.
Removes language exempting insurers that are issuing a long-term care policy from specified provisions.
The General Assembly of the Commonwealth of Pennsylvania hereby enacts as follows:
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:
Section 1.
(1) cancel, limit, or deny coverage or establish differentials in premium rates based on a person's genetic information;
Short title.
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.
This act shall be known and may be cited as the Genetic Materials Privacy and Compensation Act.
Provides that the provisions may not be construed as:
Section 2.
(1) preventing a life insurer, disability insurer, or long-term care insurer from accessing an individual's medical record as part of an application;
Definitions.
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.
The following words and phrases when used in this act shall have the meanings given to them in this section unless the context clearly indicates otherwise:
Effective July 1, 2026.
"Genetic material." As follows:
LRB104 17552 BDA 30980 b A BILL FOR HB4897 LRB104 17552 BDA 30980 b AN ACT concerning health.
(1) Deoxyribonucleic acid, including mitochondrial DNA, complementary DNA and DNA derived from ribonucleic acid.
Be it enacted by the People of the State of Illinois, represented in the General Assembly:
(2) The term includes a gene, chromosome or alteration of a gene or chromosome that may be tested to determine the existence or risk of a disease, disorder, trait, propensity, syndrome or information identifying an individual or a blood relative.
(3) The term does not include family history or a genetically transmitted characteristic whose existence or identity is determined through means other than a genetic test.
"Genetic material collection." Information collected, or planned to be collected, by a genetic material testing entity about the content accessed, personal identifiers, reports or knowledge derived from testing and any other reports or statistics combined with the information or data.
"Genetic material testing." As follows:
(1) DNA or genetic typing and testing to determine the presence or absence of genetic characteristics in an individual.
(2) The term includes a test of nucleic acids or chromosomes in order to diagnose or identify a genetic characteristic.
(3) The term does not include:
(i) A routine physical measurement.
(ii) A test for drugs, alcohol, cholesterol or human immunodeficiency virus.
(iii) A chemical, blood or urine analysis.
(iv) Any other diagnostic test that is widely accepted and in use in clinical practice.
"Genetic material testing entity." An entity collecting, testing or otherwise analyzing the genetic material of individuals, including:
(1) A medical facility.
20250HB1179PN1316 - 2 - (2) An entity that provides genealogy services.
(3) A law enforcement agency.
"Prominently disclose." As follows:
(1) To communicate in a manner that is difficult to miss and easily understandable by ordinary individuals, including the following:
(i) A visual disclosure that, by its size, contrast, location, length, appearance and other characteristics, stands out from accompanying text or other visual elements so that it is easily noticed, read and understood.
(ii) An audible disclosure, including by telephone or streaming video, that is delivered in a volume, speed and cadence sufficient for ordinary individuals to easily hear and understand.
(iii) An interactive electronic medium, such as in connection with an update to device firmware, the disclosure of which is unavoidable.
(iv) A disclosure that uses diction and syntax understandable to ordinary individuals and appears in each language in which the triggering representation appears.
(v) A disclosure that complies with the requirements in each medium through which it is received, including all electronic devices and face-to-face communications.
(vi) A disclosure that is not contradicted, mitigated by or inconsistent with anything else in the communication.
(2) When the communication targets a specific audience, such as children, the elderly or the terminally ill, the term 20250HB1179PN1316 - 3 - "ordinary individuals" includes reasonable members of that group.
"Third party." An entity that gathers or otherwise has access to an individual's genetic material whether obtained for the entity's purposes or accessed from another entity.
Section 3.
Disclosure requirements.
(a) Prohibition.--In addition to other requirements imposed by law, a genetic material testing entity, directly or through a corporation, subsidiary, division, website or other device or affiliate, may not misrepresent, expressly or by implication:
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(1) The extent to which data is collected, used or maintained or methods for protecting the privacy, confidentiality or security of genetic material.
(2) The purpose of the collection, use or disclosure of genetic material.
(b) Notice and consent.-- (1) A genetic material testing entity or third party, directly or through a corporation, subsidiary, division, website or other device or affiliate, in connection with the collection of genetic material of an individual, shall:
(i) Prior to collection of the genetic material undertaken after the effective date of this section, prominently disclose to the individual, separate and apart from a privacy policy, terms of use page or other similar documents, the following:
(A) The type of genetic material that will be collected and used.
(B) The type of genetic material that will be shared with a third party.
(C) The identity of the third party.
20250HB1179PN1316 - 4 - (D) The purpose for any genetic testing entity sharing of the data collected.
(E) A data-sharing agreement between the genetic testing entity or third party and a Federal, State or local law enforcement agency or other government agency.
(ii) Obtain the individual's affirmative express consent to the genetic material collection as follows:
(A) At the time the disclosure under subparagraph (i) is made.
(B) Upon a material change to the terms disclosed under subparagraph (i).
(iii) Provide instruction, if the individual's affirmative express consent is sought under subparagraph (ii), for how the individual may revoke consent to the genetic material collection and sharing.
(iv) Obtain the individual's affirmative express consent to continued genetic material collection or sharing.
(2) A genetic testing entity or third party, directly or through a corporation, subsidiary, division, website or other device or affiliate, may not collect the genetic material of an individual who does not provide affirmative express consent under paragraph (1)(ii).
(3) A genetic material testing entity or third party collecting or accessing the genetic material of an individual shall not provide information on the genetic material to law enforcement without a warrant or the explicit, affirmative permission of the individual providing the genetic material.
Section 4.
Compensation.
20250HB1179PN1316 - 5 - (a) Prohibition.--A genetic material testing entity or third party collecting or accessing the genetic material of an individual is prohibited from selling or donating information about an individual's genetic material without:
(1) getting express authorization from the individual or, in the case that the individual is deceased, the next of kin;
and (2) providing fair and adequate compensation at a rate of not less than 90% of the amount received in compensation for the sale of the individual's genetic material.
(b) Nonapplicability.--Subsection (a)(2) does not apply if an individual or, in the case that the individual is deceased, the next of kin, makes a voluntary and direct genetic material donation of the individual's genetic material for medical treatment or medical or scientific study.
The Genetic Information Privacy Act is amended by changing Section 20 as follows:
Genetic materials database requests.
(410 ILCS 513/20) Sec.
(a) Insurance companies.--An insurance company may not request genetic material or related data of an insured or an individual applying for insurance from a company or entity maintaining a genetic database.
20.
(b) Employers.--An employer may not request genetic material or related data of an employee or a prospective employee from a company or entity maintaining a genetic database.
Use of genetic testing information for insurance purposes.
Section 6.
(a) An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance.
Data deletion requirements.
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.
(a) Destruction of genetic material.--Within 120 days of the effective date of this section, a genetic material testing entity or third party, in connection with genetic material collection for a product or service, and any person or entity in active concert or participation, directly or through a corporation, subsidiary, division, website or other device or 20250HB1179PN1316 - 6 - affiliate, shall destroy genetic material collected prior to the effective date of this section, except:
(b) An insurer shall not use or disclose protected health information that is genetic information for underwriting purposes.
(1) If the genetic material collected was requested by a government agency or required by law, regulation or court order, including rules applicable to the safeguarding of evidence in pending litigation.
For purposes of this Section, "underwriting purposes" means, with respect to an insurer:
(2) If the individual associated with the genetic material collected has expressly consented to the collection, use or disclosure as provided under section 3(b).
(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);
(b) Individual request.--After the effective date of this section, a genetic material testing entity or third party in connection with genetic material collection, and any person or entity in active concert or participation with a genetic material testing entity or third party, directly or through a corporation, subsidiary, division, website or other device or affiliate, shall destroy an individual's genetic material within 30 days of the individual requesting that the genetic material be destroyed.
(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);
Section 7.
(3) the application of any pre-existing condition exclusion under the plan, coverage, or policy;
Mandated genetic materials privacy program.
and (4) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.
(a) Privacy program.--A genetic material testing entity or third party, directly or through a corporation, subsidiary, division, website or affiliate, shall establish, implement and maintain a comprehensive privacy program that is reasonably designed to:
"Underwriting purposes" does not include determinations of medical appropriateness where an individual seeks a benefit under the plan, coverage, or policy.
(1) Address privacy risks related to the development and management of new and existing products and services for individuals.
This subsection (b) does not apply to insurers that are issuing a long-term care policy, excluding a nursing home fixed indemnity plan.
(2) Protect the privacy and confidentiality of genetic material collected directly or indirectly by a genetic material testing entity or third party, directly or through a 20250HB1179PN1316 - 7 - corporation, subsidiary, division, website or other device or affiliate.
(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.
(b) Requirements.--A privacy program, the content and implementation of which shall be documented in writing, shall contain controls and procedures appropriate to the size and complexity of the party collecting the genetic material, the nature and scope of the party's activities and the sensitivity of the genetic material, including:
(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.
(1) The designation of an employee or employees to coordinate and be responsible for the privacy program.
(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.
(2) The identification of reasonably foreseeable risks, both internal and external, that could result in the unauthorized collection, use or disclosure of genetic material or private information by the party collecting the genetic material or its agents and an assessment of the sufficiency of any safeguards in place to control these risks.
(f) A health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State may not:
At a minimum, the risk assessment shall include consideration of risks in each area of relevant operation, including:
(1) cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information collected, used, or stored for health care treatment;
(i) Employee training and management, including training on the requirements of this 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.
(ii) Product design, development and research.
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.
(3) The design and implementation of reasonable controls and procedures to address risks and regular testing or monitoring of the effectiveness of those controls and procedures.
(g) Nothing in this Section may be construed as:
(4) The development and use of reasonable steps to select and retain Internet service providers capable of appropriately protecting the privacy of information that the Internet service providers receive from the genetic material 20250HB1179PN1316 - 8 - testing entity or third party or agents of the genetic material testing entity or third party and requiring the Internet service providers, by contract, to implement and maintain appropriate privacy protections for genetic material.
(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;
(5) The evaluation and adjustment of the genetic material testing entity's or third party's privacy program in light of the results of the testing and monitoring required under paragraph (3), a change to the genetic material testing entity's or third party's operations or business arrangements or other circumstance that the manufacturer or third party or agents of the manufacturer or third party know or have reason to know may have an impact on the effectiveness of the privacy program.
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.
Section 8.
(Source:
Ownership.
P.A.
Individuals shall have inherent ownership rights for their genetic material and a privacy interest in it, even when voluntarily providing their genetic material to a for-profit company.
101-132, eff.
Section 9.
1-1-20.) Section 99.
Violations.
Conduct that is unlawful or otherwise prohibited under this act shall constitute an unfair method of competition and unfair or deceptive act or practice as those terms are defined under section 2 of the act of December 17, 1968 (P.L.1224, No.387), known as the Unfair Trade Practices and Consumer Protection Law, and shall be subject to enforcement and remedies as provided in that act.
Section 10.
Remedies available to individuals.
Nothing in this act shall be construed to limit the remedies available to individuals, the Attorney General or a district 20250HB1179PN1316 - 9 - attorney under the act of December 17, 1968 (P.L.1224, No.387), known as the Unfair Trade Practices and Consumer Protection Law, or other Federal or State law.
Section 11.
This Act takes effect July 1, 2026.
This act shall take effect in 120 days.
20250HB1179PN1316 - 10 -