HB4897 104TH GENERAL ASSEMBLY

LRB104 17552 BDA 30980 b

104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
HB4897

Introduced , by Rep. Nabeela Syed

SYNOPSIS AS INTRODUCED:

410 ILCS 513/20

Amends the Genetic Information Privacy Act. Removes language exempting insurers that are issuing a long-term care policy from specified provisions. Provides that, with regard to any policy, contract, or plan 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, a health insurer, life insurer, disability insurer, or long-term care insurer may not: (1) cancel, limit, or deny coverage or establish differentials in premium rates based on a person's genetic information; 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. Provides that the provisions may not be construed as: (1) preventing a life insurer, disability insurer, or long-term care insurer from accessing an individual's medical record as part of an application; 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. Effective July 1, 2026.

A BILL FOR

AN ACT concerning health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 5. The Genetic Information Privacy Act is amended by changing Section 20 as follows:

(410 ILCS 513/20)

Sec. 20. Use of genetic testing information for insurance purposes.

(a) An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance. 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.

(b) An insurer shall not use or disclose protected health information that is genetic information for underwriting purposes. For purposes of this Section, "underwriting purposes" means, with respect to an insurer:

(1) rules for, or determination of, eligibility (including enrollment and continued eligibility) for, or determination of, benefits under the plan, coverage, or 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);

(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);

(3) the application of any pre-existing condition exclusion under the plan, coverage, or policy; and

(4) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.

"Underwriting purposes" does not include determinations of medical appropriateness where an individual seeks a benefit under the plan, coverage, or policy.

This subsection (b) does not apply to insurers that are issuing a long-term care policy, excluding a nursing home fixed indemnity plan.

(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.

(d) An insurer that possesses information derived from genetic testing may not release the information to a third party, except as specified in this Act.

(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.

(f) A health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State may not:

(1) cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information collected, used, or stored for health care treatment; 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 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.

(g) Nothing in this Section may be construed as:

(1) preventing a life insurer, disability insurer, or long-term care insurer from accessing an individual's medical record as part of an application; 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.

(Source: P.A. 101-132, eff. 1-1-20.)

Section 99. Effective date. This Act takes effect July 1, 2026.