Bill Text: IL HB4897 | 2025-2026 | 104th General Assembly | Introduced

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Bill Title: 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.

Sponsorship: Partisan Bill (Democrat 1)

Status: (Introduced - Dead) 2026-03-27 - Rule 19(a) / Re-referred to Rules Committee [HB4897 Detail]

Download: Illinois-2025-HB4897-Introduced.html

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104TH GENERAL ASSEMBLY State of Illinois 2025 and 2026HB4897 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.
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A BILL FOR
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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

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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

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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

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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.