GENETIC INFORMATION PRIVACY

Illinois General Assembly - Full Text of HB4897

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HB4897 - 104th General Assembly

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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.
LRB104 17552 BDA 30980 b

A BILL FOR

HB4897
LRB104 17552 BDA 30980 b
1

AN ACT concerning health.

2

Be it enacted by the People of the State of Illinois,
3
represented in the General Assembly:

4

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

6

(410 ILCS 513/20)
7

Sec. 20.
Use of genetic testing information for insurance
8
purposes.
9

(a) An insurer may not seek information derived from
10
genetic testing for use in connection with a policy of
11
accident and health insurance. Except as provided in
12
subsection (c), an insurer that receives information derived
13
from genetic testing, regardless of the source of that
14
information, may not use the information for a nontherapeutic
15
purpose as it relates to a policy of accident and health
16
insurance.
17

(b) An insurer shall not use or disclose protected health
18
information that is genetic information for underwriting
19
purposes. For purposes of this Section, "underwriting
20
purposes" means, with respect to an insurer:
21

(1) rules for, or determination of, eligibility
22

(including enrollment and continued eligibility) for, or
23

determination of, benefits under the plan, coverage, or

HB4897
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LRB104 17552 BDA 30980 b
1

policy (including changes in deductibles or other
2

cost-sharing mechanisms in return for activities such as
3

completing a health risk assessment or participating in a
4

wellness program);
5

(2) the computation of premium or contribution amounts
6

under the plan, coverage, or policy (including discounts,
7

rebates, payments in kind, or other premium differential
8

mechanisms in return for activities, such as completing a
9

health risk assessment or participating in a wellness
10

program);
11

(3) the application of any pre-existing condition
12

exclusion under the plan, coverage, or policy; and
13

(4) other activities related to the creation, renewal,
14

or replacement of a contract of health insurance or health
15

benefits.
16

"Underwriting purposes" does not include determinations of
17
medical appropriateness where an individual seeks a benefit
18
under the plan, coverage, or policy.
19

This subsection (b) does not apply to insurers that are
20
issuing a long-term care policy, excluding a nursing home
21
fixed indemnity plan.

22

(c) An insurer may consider the results of genetic testing
23
in connection with a policy of accident and health insurance
24
if the individual voluntarily submits the results and the
25
results are favorable to the individual.
26

(d) An insurer that possesses information derived from

HB4897
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LRB104 17552 BDA 30980 b
1
genetic testing may not release the information to a third
2
party, except as specified in this Act.
3

(e) A company providing direct-to-consumer commercial
4
genetic testing is prohibited from sharing any genetic test
5
information or other personally identifiable information about
6
a consumer with any health or life insurance company without
7
written consent from the consumer.
8

(f) A health insurer, life insurer, disability insurer, or
9
long-term care insurer authorized to transact insurance in
10
this State may not:
11

(1) cancel, limit, or deny coverage or establish
12

differentials in premium rates based on genetic
13

information collected, used, or stored for health care
14

treatment; or
15

(2) require or solicit an individual's genetic
16

information, use an individual's genetic test results, or
17

consider an individual's decisions or actions relating to
18

genetic information or a genetic test in any manner for
19

any insurance purpose.
20

This subsection applies to any policy, contract, or plan
21
that is offered, entered into, issued, amended, or renewed on
22
or after January 1, 2027 by a health insurer, life insurer,
23
disability insurer, or long-term care insurer authorized to
24
transact insurance in this State.

25

(g) Nothing in this Section may be construed as:
26

(1) preventing a life insurer, disability insurer, or

HB4897
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LRB104 17552 BDA 30980 b
1

long-term care insurer from accessing an individual's
2

medical record as part of an application; or
3

(2) prohibiting a life insurer, disability insurer, or
4

long-term care insurer from considering a clinical
5

diagnosis, such as a manifest disease or disorder,
6

included in an individual's medical record for insurance
7

purposes to the extent otherwise allowable by law.
8
(Source: P.A. 101-132, eff. 1-1-20
.)

9

Section 99.
Effective date.
This Act takes effect July 1,
10
2026.

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