GENETIC INFO PRIVACY-BIOMARKER

Illinois General Assembly - Full Text of SB2886

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SB2886 - 104th General Assembly

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SB2886 Enrolled
LRB104 17128 BDA 30547 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 Sections 5, 10, 15, 20, 25, 30, 31, 31.1, 31.2,
6
31.3, 31.5, 31.7, 31.8, 31.9, 31.10, and 50 as follows:

7

(410 ILCS 513/5)
8

Sec. 5.
Legislative findings; intent.
The General Assembly
9
finds that:

10

(1) The use of genetic testing
, biomarker testing, or
11

both
can be valuable to an individual.

12

(2) Despite existing laws, regulations, and
13

professional standards which require or promote voluntary
14

and confidential use of genetic testing
and biomarker
15

testing
information, many members of the public are
16

deterred from seeking genetic testing
or biomarker testing

17

because of fear that test results will be disclosed
18

without consent in a manner not permitted by law or will be
19

used in a discriminatory manner.

20

(3) The public health will be served by facilitating
21

voluntary and confidential nondiscriminatory use of
22

genetic testing
and biomarker testing
information.
23

(4) The use of electronic health record systems and

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

the exchange of patient records, both paper and
2

electronic, through secure means, including through secure
3

health information exchanges, should be encouraged to
4

improve patient health care and care coordination,
5

facilitate public health reporting, and control health
6

care costs, among other purposes.
7

(5) Limiting the use or disclosure of, and requests
8

for, protected health information to the minimum necessary
9

to accomplish an intended purpose, when being transmitted
10

by or on behalf of a covered entity under HIPAA, is a key
11

component of health information privacy. The disclosure of
12

genetic information
or biomarkers
, when allowed by this
13

Act, shall be performed in accordance with the minimum
14

necessary standard when required under HIPAA.
15
(Source: P.A. 98-1046, eff. 1-1-15
.)

16

(410 ILCS 513/10)
17

Sec. 10.
Definitions.
As used in this Act:
18

"Biomarker" has the meaning ascribed to it in Section
19
356z.46 of the Illinois Insurance Code.
20

"Biomarker testing" has the meaning ascribed to it in
21
Section 356z.46 of the Illinois Insurance Code.

22

"Business associate" has the meaning ascribed to it under
23
HIPAA, as specified in 45 CFR 160.103.
24

"Covered entity" has the meaning ascribed to it under
25
HIPAA, as specified in 45 CFR 160.103.

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

"De-identified information" means health information that
2
is not individually identifiable as described under HIPAA, as
3
specified in 45 CFR 164.514(b).
4

"Disclosure" has the meaning ascribed to it under HIPAA,
5
as specified in 45 CFR 160.103.
6

"Employer" means the State of Illinois, any unit of local
7
government, and any board, commission, department,
8
institution, or school district, any party to a public
9
contract, any joint apprenticeship or training committee
10
within the State, and every other person employing employees
11
within the State.
12

"Employment agency" means both public and private
13
employment agencies and any person, labor organization, or
14
labor union having a hiring hall or hiring office regularly
15
undertaking, with or without compensation, to procure
16
opportunities to work, or to procure, recruit, refer, or place
17
employees.
18

"Family member" means, with respect to an individual, (i)
19
the spouse of the individual; (ii) a dependent child of the
20
individual, including a child who is born to or placed for
21
adoption with the individual; (iii) any other person
22
qualifying as a covered dependent under a managed care plan;
23
and (iv) all other individuals related by blood or law to the
24
individual or the spouse or child described in subsections (i)
25
through (iii) of this definition.
26

"Genetic information" has the meaning ascribed to it under

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
HIPAA, as specified in 45 CFR 160.103.
2

"Genetic monitoring" means the periodic examination of
3
employees to evaluate acquired modifications to their genetic
4
material, such as chromosomal damage or evidence of increased
5
occurrence of mutations that may have developed in the course
6
of employment due to exposure to toxic substances in the
7
workplace in order to identify, evaluate, and respond to
8
effects of or control adverse environmental exposures in the
9
workplace.
10

"Genetic services" has the meaning ascribed to it under
11
HIPAA, as specified in 45 CFR 160.103.
12

"Genetic testing" and "genetic test" have the meaning
13
ascribed to "genetic test" under HIPAA, as specified in 45 CFR
14
160.103. "Genetic testing" includes direct-to-consumer
15
commercial genetic testing.
16

"Health care operations" has the meaning ascribed to it
17
under HIPAA, as specified in 45 CFR 164.501.
18

"Health care professional" means (i) a licensed physician,
19
(ii) a licensed physician assistant, (iii) a licensed advanced
20
practice registered nurse, (iv) a licensed dentist, (v) a
21
licensed podiatric physician, (vi) a licensed genetic
22
counselor, or (vii) an individual certified to provide genetic
23
testing by a state or local public health department.
24

"Health care provider" has the meaning ascribed to it
25
under HIPAA, as specified in 45 CFR 160.103.
26

"Health facility" means a hospital, blood bank, blood

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
center, sperm bank, or other health care institution,
2
including any "health facility" as that term is defined in the
3
Illinois Finance Authority Act.
4

"Health information exchange" or "HIE" means a health
5
information exchange or health information organization that
6
exchanges health information electronically. In certain
7
circumstances, in accordance with HIPAA, an HIE will be a
8
business associate.
9

"Health oversight agency" has the meaning ascribed to it
10
under HIPAA, as specified in 45 CFR 164.501.
11

"HIPAA" means the Health Insurance Portability and
12
Accountability Act of 1996, Public Law 104-191, as amended by
13
the Health Information Technology for Economic and Clinical
14
Health Act of 2009, Public Law 111-05, and any subsequent
15
amendments thereto and any regulations promulgated thereunder.
16

"Insurer" means (i) an entity that is subject to the
17
jurisdiction of the Director of Insurance and (ii) a managed
18
care plan.
19

"Labor organization" includes any organization, labor
20
union, craft union, or any voluntary unincorporated
21
association designed to further the cause of the rights of
22
union labor that is constituted for the purpose, in whole or in
23
part, of collective bargaining or of dealing with employers
24
concerning grievances, terms or conditions of employment, or
25
apprenticeships or applications for apprenticeships, or of
26
other mutual aid or protection in connection with employment,

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
including apprenticeships or applications for apprenticeships.
2

"Licensing agency" means a board, commission, committee,
3
council, department, or officers, except a judicial officer,
4
in this State or any political subdivision authorized to
5
grant, deny, renew, revoke, suspend, annul, withdraw, or amend
6
a license or certificate of registration.
7

"Limited data set" has the meaning ascribed to it under
8
HIPAA, as described in 45 CFR 164.514(e)(2).
9

"Managed care plan" means a plan that establishes,
10
operates, or maintains a network of health care providers that
11
have entered into agreements with the plan to provide health
12
care services to enrollees where the plan has the ultimate and
13
direct contractual obligation to the enrollee to arrange for
14
the provision of or pay for services through:
15

(1) organizational arrangements for ongoing quality
16

assurance, utilization review programs, or dispute
17

resolution; or
18

(2) financial incentives for persons enrolled in the
19

plan to use the participating providers and procedures
20

covered by the plan.
21

A managed care plan may be established or operated by any
22
entity including a licensed insurance company, hospital or
23
medical service plan, health maintenance organization, limited
24
health service organization, preferred provider organization,
25
third party administrator, or an employer or employee
26
organization.

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

"Minimum necessary" means HIPAA's standard for using,
2
disclosing, and requesting protected health information found
3
in 45 CFR 164.502(b) and 164.514(d).
4

"Nontherapeutic purpose" means a purpose that is not
5
intended to improve or preserve the life or health of the
6
individual whom the information concerns.
7

"Organized health care arrangement" has the meaning
8
ascribed to it under HIPAA, as specified in 45 CFR 160.103.
9

"Patient safety activities" has the meaning ascribed to it
10
under 42 CFR 3.20.
11

"Payment" has the meaning ascribed to it under HIPAA, as
12
specified in 45 CFR 164.501.
13

"Person" includes any natural person, partnership,
14
association, joint venture, trust, governmental entity, public
15
or private corporation, health facility, or other legal
16
entity.
17

"Protected health information" has the meaning ascribed to
18
it under HIPAA, as specified in 45 CFR 164.103.
19

"Research" has the meaning ascribed to it under HIPAA, as
20
specified in 45 CFR 164.501.
21

"State agency" means an instrumentality of the State of
22
Illinois and any instrumentality of another state which
23
pursuant to applicable law or a written undertaking with an
24
instrumentality of the State of Illinois is bound to protect
25
the privacy of genetic information of Illinois persons
or
26
biomarkers of Illinois persons
.

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

"Treatment" has the meaning ascribed to it under HIPAA, as
2
specified in 45 CFR 164.501.
3

"Use" has the meaning ascribed to it under HIPAA, as
4
specified in 45 CFR 160.103, where context dictates.
5
(Source: P.A. 103-508, eff. 8-4-23; 104-417, eff. 8-15-25.)

6

(410 ILCS 513/15)
7

Sec. 15.
Confidentiality of genetic information.
8

(a) Except as otherwise provided in this Act,
biomarker
9
testing, information derived from biomarker testing,
genetic
10
testing
,
and information derived from genetic testing
are

is

11
confidential and privileged and may be released only to the
12
individual tested and to persons specifically authorized, in
13
writing in accordance with Section 30, by that individual to
14
receive the information. Except as otherwise provided in
15
subsection (b) and in Section 30, this information shall not
16
be admissible as evidence, nor discoverable in any action of
17
any kind in any court, or before any tribunal, board, agency,
18
or person pursuant to Part 21 of Article VIII of the Code of
19
Civil Procedure. No liability shall attach to any hospital,
20
physician, or other health care provider for compliance with
21
the provisions of this Act including a specific written
22
release by the individual in accordance with this Act.
23

(b) When a biological sample is legally obtained by a
24
peace officer for use in a criminal investigation or
25
prosecution, information derived from genetic testing of that

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
sample may be disclosed for identification purposes to
2
appropriate law enforcement authorities conducting the
3
investigation or prosecution and may be used in accordance
4
with Section 5-4-3 of the Unified Code of Corrections. The
5
information may be used for identification purposes during the
6
course of the investigation or prosecution with respect to the
7
individual tested without the consent of the individual and
8
shall be admissible as evidence in court.
9

The information shall be confidential and may be disclosed
10
only for purposes of criminal investigation or prosecution.
11

Genetic testing and genetic information derived thereof
12
shall be admissible as evidence and discoverable, subject to a
13
protective order, in any actions alleging a violation of this
14
Act, seeking to enforce Section 30 of this Act through the
15
Illinois Insurance Code, alleging discriminatory genetic
16
testing or use of genetic information under the Illinois Human
17
Rights Act or the Illinois Civil Rights Act of 2003, or
18
requesting a workers' compensation claim under the Workers'
19
Compensation Act.
20

(c) If the subject of the information requested by law
21
enforcement is found innocent of the offense or otherwise not
22
criminally penalized, then the court records shall be expunged
23
by the court within 30 days after the final legal proceeding.
24
The court shall notify the subject of the information of the
25
expungement of the records in writing.
26

(d) Results of genetic testing that indicate that the

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
individual tested is at the time of the test afflicted with a
2
disease, whether or not currently symptomatic, are not subject
3
to the confidentiality requirements of this Act.
4
(Source: P.A. 95-927, eff. 1-1-09.)

5

(410 ILCS 513/20)
6

Sec. 20.
Use of genetic testing information for insurance
7
purposes.
8

(a) An insurer may not seek information derived from
9
genetic testing
or biomarker testing
for use in connection
10
with a policy of accident and health insurance. Except as
11
provided in subsection (c), an insurer that receives
12
information derived from genetic testing
or biomarker testing
,
13
regardless of the source of that information, may not use the
14
information for a nontherapeutic purpose as it relates to a
15
policy of accident and health insurance.
16

(b) An insurer shall not use or disclose protected health
17
information that is genetic information
or a biomarker
for
18
underwriting purposes. For purposes of this Section,
19
"underwriting purposes" means, with respect to an insurer:
20

(1) rules for, or determination of, eligibility
21

(including enrollment and continued eligibility) for, or
22

determination of, benefits under the plan, coverage, or
23

policy (including changes in deductibles or other
24

cost-sharing mechanisms in return for activities such as
25

completing a health risk assessment or participating in a

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

wellness program);
2

(2) the computation of premium or contribution amounts
3

under the plan, coverage, or policy (including discounts,
4

rebates, payments in kind, or other premium differential
5

mechanisms in return for activities, such as completing a
6

health risk assessment or participating in a wellness
7

program);
8

(3) the application of any pre-existing condition
9

exclusion under the plan, coverage, or policy; and
10

(4) other activities related to the creation, renewal,
11

or replacement of a contract of health insurance or health
12

benefits.
13

"Underwriting purposes" does not include determinations of
14
medical appropriateness where an individual seeks a benefit
15
under the plan, coverage, or policy.
16

This subsection (b) does not apply to insurers that are
17
issuing a long-term care policy, excluding a nursing home
18
fixed indemnity plan.
19

(c) An insurer may consider the results of genetic testing
20
or biomarker testing
in connection with a policy of accident
21
and health insurance if the individual voluntarily submits the
22
results and the results are favorable to the individual.
23

(d) An insurer that possesses information derived from
24
genetic testing
or biomarker testing
may not release the
25
information to a third party, except as specified in this Act.
26

(e) A company providing direct-to-consumer commercial

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
genetic testing
or biomarker testing
is prohibited from
2
sharing any genetic test
information or biomarker
information
3
or other personally identifiable information about a consumer
4
with any health or life insurance company without written
5
consent from the consumer.
6
(Source: P.A. 101-132, eff. 1-1-20
.)

7

(410 ILCS 513/25)
8

Sec. 25.
Use of genetic testing information
or biomarker
9
testing information
by employers.
10

(a) An employer, employment agency, labor organization,
11
and licensing agency shall treat genetic testing
,

and
genetic
12
information
, biomarker testing, and biomarkers
in such a
13
manner that is consistent with the requirements of federal
14
law, including but not limited to the Genetic Information
15
Nondiscrimination Act of 2008, the Americans with Disabilities
16
Act, Title VII of the Civil Rights Act of 1964, the Family and
17
Medical Leave Act of 1993, the Occupational Safety and Health
18
Act of 1970, the Federal Mine Safety and Health Act of 1977, or
19
the Atomic Energy Act of 1954.
20

(b) An employer may release genetic testing
or biomarker
21
testing
information only in accordance with this Act.
22

(c) An employer, employment agency, labor organization,
23
and licensing agency shall not directly or indirectly do any
24
of the following:
25

(1) solicit, request, require
,
or purchase
biomarker

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

testing, biomarkers,
genetic testing
,
or genetic
2

information of a person or a family member of the person,
3

or administer a genetic test
or biomarker test
to a person
4

or a family member of the person as a condition of
5

employment, preemployment application, labor organization
6

membership, or licensure;
7

(2) affect the terms, conditions, or privileges of
8

employment, preemployment application, labor organization
9

membership, or licensure, or terminate the employment,
10

labor organization membership, or licensure of any person
11

because of
biomarker testing, biomarkers,
genetic testing
,

12

or genetic information with respect to the employee or
13

family member, or information about a request for or the
14

receipt of genetic testing
or biomarker testing
by such
15

employee or family member of such employee;
16

(3) limit, segregate, or classify employees in any way
17

that would deprive or tend to deprive any employee of
18

employment opportunities or otherwise adversely affect the
19

status of the employee as an employee because of
biomarker
20

testing, biomarkers,
genetic testing
,
or genetic
21

information with respect to the employee or a family
22

member, or information about a request for or the receipt
23

of
biomarker testing, biomarkers,
genetic testing
,
or
24

genetic information by such employee or family member of
25

such employee; and
26

(4) retaliate through discharge or in any other manner

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1

against any person alleging a violation of this Act or
2

participating in any manner in a proceeding under this
3

Act.
4

(d) An agreement between a person and an employer,
5
prospective employer, employment agency, labor organization,
6
or licensing agency, or its employees, agents, or members
7
offering the person employment, labor organization membership,
8
licensure, or any pay or benefit in return for taking a genetic
9
test
or biomarker test
is prohibited.
10

(e) An employer shall not use
biomarker testing,
11
biomarkers,
genetic information
,
or genetic testing in
12
furtherance of a workplace wellness program benefiting
13
employees unless (1) health or genetic services are offered by
14
the employer, (2) the employee provides written authorization
15
in accordance with Section 30 of this Act, (3) only the
16
employee or family member if the family member is receiving
17
genetic services and the licensed health care professional or
18
licensed genetic counselor involved in providing such services
19
receive individually identifiable information concerning the
20
results of such services, and (4) any individually
21
identifiable information is only available for purposes of
22
such services and shall not be disclosed to the employer
23
except in aggregate terms that do not disclose the identity of
24
specific employees. An employer shall not penalize an employee
25
who does not disclose his or her genetic information
or
26
biomarkers
or does not choose to participate in a program

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
requiring disclosure of the employee's genetic information
or
2
biomarkers
.
3

(f) Nothing in this Act shall be construed to prohibit
4
biomarker testing or
genetic testing of an employee who
5
requests a
biomarker test or
genetic test and who provides
6
written authorization, in accordance with Section 30 of this
7
Act, from taking a
biomarker test or
genetic test for the
8
purpose of initiating a workers' compensation claim under the
9
Workers' Compensation Act.
10

(g) A purchase of commercially and publicly available
11
documents, including newspapers, magazines, periodicals, and
12
books but not including medical databases or court records or
13
inadvertently requesting family medical history by an
14
employer, employment agency, labor organization, and licensing
15
agency does not violate this Act.
16

(h) Nothing in this Act shall be construed to prohibit an
17
employer that conducts DNA analysis for law enforcement
18
purposes as a forensic laboratory and that includes such
19
analysis in the Combined DNA Index System pursuant to the
20
federal Violent Crime Control and Law Enforcement Act of 1994
21
from requesting or requiring genetic testing or genetic
22
information of such employer's employees, but only to the
23
extent that such genetic testing or genetic information is
24
used for analysis of DNA identification markers for quality
25
control to detect sample contamination.
26

(i) Nothing in this Act shall be construed to prohibit an

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
employer from requesting or requiring genetic information to
2
be used for genetic monitoring of the biological effects of
3
toxic substances in the workplace, but only if (1) the
4
employer provides written notice of the genetic monitoring to
5
the employee; (2) the employee provides written authorization
6
under Section 30 of this Act or the genetic monitoring is
7
required by federal or State law; (3) the employee is informed
8
of individual monitoring results; (4) the monitoring is in
9
compliance with any federal genetic monitoring regulations or
10
State genetic monitoring regulations under the authority of
11
the federal Occupational Safety and Health Act of 1970; and
12
(5) the employer, excluding any health care provider, health
13
care professional, or health facility that is involved in the
14
genetic monitoring program, receives the results of the
15
monitoring only in aggregate terms that do not disclose the
16
identity of specific employees.
17

(j) Despite lawful acquisition of
biomarker testing,
18
biomarkers,
genetic testing
,
or genetic information under
19
subsections (e) through (i) of this Section, an employer,
20
employment agency, labor organization, and licensing agency
21
still may not use or disclose the
biomarker test, biomarkers,

22
genetic test
,
or genetic information in violation of this Act.
23

(k) Except as provided in subsections (e), (f), (h), and
24
(i) of this Section, a person shall not knowingly sell to or
25
interpret for an employer, employment agency, labor
26
organization, or licensing agency, or its employees, agents,

SB2886 Enrolled
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LRB104 17128 BDA 30547 b
1
or members, a
biomarker test or
genetic test of an employee,
2
labor organization member, or license holder, or of a
3
prospective employee, member, or license holder.
4
(Source: P.A. 100-396, eff. 1-1-18
.)

5

(410 ILCS 513/30)
6

Sec. 30.
Disclosure of person tested and test results.
7

(a) No person may disclose or be compelled to disclose the
8
identity of any person upon whom a genetic test
or biomarker
9
test
is performed or the results of a genetic test
or biomarker
10
test
in a manner that permits identification of the subject of
11
the test, except to the following persons:
12

(1) The subject of the test or the subject's legally
13

authorized representative. This paragraph does not create
14

a duty or obligation under which a health care provider
15

must notify the subject's spouse or legal guardian of the
16

test results, and no such duty or obligation shall be
17

implied. No civil liability or criminal sanction under
18

this Act shall be imposed for any disclosure or
19

nondisclosure of a test result to a spouse by a physician
20

acting in good faith under this paragraph. For the purpose
21

of any proceedings, civil or criminal, the good faith of
22

any physician acting under this paragraph shall be
23

presumed.
24

(2) Any person designated in a specific written
25

legally effective authorization for release of the test

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1

results executed by the subject of the test or the
2

subject's legally authorized representative.
3

(3) An authorized agent or employee of a health
4

facility or health care provider if the health facility or
5

health care provider itself is authorized to obtain the
6

test results, the agent or employee provides patient care,
7

and the agent or employee has a need to know the
8

information in order to conduct the tests or provide care
9

or treatment.
10

(4) A health facility, health care provider, or health
11

care professional that procures, processes, distributes,
12

or uses:
13

(A) a human body part from a deceased person with
14

respect to medical information regarding that person;
15

or
16

(B) semen provided prior to the effective date of
17

this Act for the purpose of artificial insemination.
18

(5) Health facility staff committees for the purposes
19

of conducting program monitoring, program evaluation, or
20

service reviews.
21

(6) In the case of a minor under 18 years of age, the
22

health care provider, health care professional, or health
23

facility who ordered the test shall make a reasonable
24

effort to notify the minor's parent or legal guardian if,
25

in the professional judgment of the health care provider,
26

health care professional, or health facility, notification

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1

would be in the best interest of the minor and the health
2

care provider, health care professional, or health
3

facility has first sought unsuccessfully to persuade the
4

minor to notify the parent or legal guardian or after a
5

reasonable time after the minor has agreed to notify the
6

parent or legal guardian, the health care provider, health
7

care professional, or health facility has reason to
8

believe that the minor has not made the notification. This
9

paragraph shall not create a duty or obligation under
10

which a health care provider, health care professional, or
11

health facility must notify the minor's parent or legal
12

guardian of the test results, nor shall a duty or
13

obligation be implied. No civil liability or criminal
14

sanction under this Act shall be imposed for any
15

notification or non-notification of a minor's test result
16

by a health care provider, health care professional, or
17

health facility acting in good faith under this paragraph.
18

For the purpose of any proceeding, civil or criminal, the
19

good faith of any health care provider, health care
20

professional, or health facility acting under this
21

paragraph shall be presumed.

22

(b) All information and records held by a State agency,
23
local health authority, or health oversight agency pertaining
24
to genetic information
or biomarkers
shall be strictly
25
confidential and exempt from copying and inspection under the
26
Freedom of Information Act. The information and records shall

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1
not be released or made public by the State agency, local
2
health authority, or health oversight agency and shall not be
3
admissible as evidence nor discoverable in any action of any
4
kind in any court or before any tribunal, board, agency, or
5
person and shall be treated in the same manner as the
6
information and those records subject to the provisions of
7
Part 21 of Article VIII of the Code of Civil Procedure except
8
under the following circumstances:
9

(A) when made with the written consent of all
10

persons to whom the information pertains;
11

(B) when authorized by Section 5-4-3 of the
12

Unified Code of Corrections;
13

(C) when made for the sole purpose of implementing
14

the Newborn Metabolic Screening Act and rules; or
15

(D) when made under the authorization of the
16

Illinois Parentage Act of 2015.
17

Disclosure shall be limited to those who have a need to
18
know the information, and no additional disclosures may be
19
made.
20

(c) Disclosure by an insurer in accordance with the
21
requirements of the Article XL of the Illinois Insurance Code
22
shall be deemed compliance with this Section.
23
(Source: P.A. 98-1046, eff. 1-1-15; 99-85, eff. 1-1-16
.)

24

(410 ILCS 513/31)
25

Sec. 31.
Uses and disclosures for treatment, payment, and

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1
health care operations.
Notwithstanding Sections 30 and 35 of
2
this Act, a covered entity may, without a patient's consent:
3

(1) use or disclose genetic information
or biomarkers

4

for its own treatment, payment, or health care operations;
5

(2) disclose genetic information
or biomarkers
for
6

treatment activities of a health care provider;
7

(3) disclose genetic information
or biomarkers
to
8

another covered entity or health care provider for the
9

payment activities of the entity that receives the
10

information;
11

(4) disclose genetic information
or biomarkers
to
12

another covered entity for health care operations
13

activities of the entity that receives the information, if
14

each entity has or had a relationship with the individual
15

who is the subject of the genetic information
or
16

biomarkers
being requested, the genetic information
or
17

biomarkers
pertains to such relationship, and the
18

disclosure is for the purpose of (A) conducting quality
19

assessment and improvement activities, including outcomes
20

evaluation and development of clinical guidelines,
21

provided that the obtaining of generalizable knowledge is
22

not the primary purpose of any studies resulting from such
23

activities; patient safety activities; population-based
24

activities relating to improving health or reducing health
25

care costs, protocol development, case management, and
26

care coordination, contacting of health care providers and

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1

patients with information about treatment alternatives;
2

and related functions that do not include treatment; (B)
3

reviewing the competence or qualifications of health care
4

professionals or health care providers, evaluating
5

practitioner and provider performance, health plan
6

performance, conducting training programs in which
7

students, trainees, or practitioners in areas of health
8

care learn under supervision to practice or improve their
9

skills as health care providers, training of non-health
10

care professionals, accreditation, certification,
11

licensing, or credentialing activities; or (C) health care
12

fraud and abuse detection or compliance; and
13

(5) disclose genetic information
or biomarkers
to
14

other participants in an organized health care arrangement
15

in which the covered entity is also a participant for any
16

health care operations activities of the organized health
17

care arrangement.
18
(Source: P.A. 98-1046, eff. 1-1-15
.)

19

(410 ILCS 513/31.1)
20

Sec. 31.1.
Uses and disclosures for health oversight
21
activities.
22

(a) Notwithstanding Sections 30 and 35 of this Act, a
23
covered entity may disclose genetic information
or biomarkers
,
24
without a patient's consent, to a health oversight agency for
25
health oversight activities authorized by law, including

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1
audits, civil, administrative, or criminal investigations;
2
inspections; licensure or disciplinary actions; civil
3
administrative or criminal proceedings or actions; or other
4
activities necessary for appropriate oversight of (i) the
5
health care system; (ii) government benefit programs for which
6
health information is relevant to beneficiary eligibility;
7
(iii) entities subject to government regulatory programs for
8
which health information is necessary for determining
9
compliance with program standards; or (iv) entities subject to
10
civil rights laws for which health information is necessary
11
for determining compliance.
12

(b) For purposes of the disclosures permitted by this
13
Section, a health oversight activity does not include an
14
investigation or other activity in which the individual is the
15
subject of the investigation or activity and such
16
investigation or other activity does not arise out of and is
17
not directly related to (i) the receipt of health care; (ii) a
18
claim for public benefits related to health; or (iii)
19
qualification for, or receipt of, public benefits or services
20
when a patient's health is integral to the claim for public
21
benefits or services, except that, if a health oversight
22
activity or investigation is conducted in conjunction with an
23
oversight activity or investigation relating to a claim for
24
public benefits not related to health, the joint activity or
25
investigation is considered a health oversight activity for
26
purposes of this Section.

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1

(c) If a covered entity is also a health oversight agency,
2
the covered entity may use genetic information
or biomarkers

3
for health oversight activities permitted by this Section.
4
(Source: P.A. 98-1046, eff. 1-1-15
.)

5

(410 ILCS 513/31.2)
6

Sec. 31.2.
Uses and disclosures for public health
7
activities.
Notwithstanding Sections 30 and 35 of this Act,
8
genetic information
or biomarkers
may be disclosed without a
9
patient's consent for public health activities and purposes to
10
the Department, when the Department is authorized by law to
11
collect or receive such information for the purpose of
12
preventing or controlling disease, injury, or disability,
13
including, but not limited to, the reporting of disease,
14
injury, vital events such as birth or death, and the conduct of
15
public health surveillance, public health investigations, and
16
public health interventions.
17
(Source: P.A. 98-1046, eff. 1-1-15
.)

18

(410 ILCS 513/31.3)
19

Sec. 31.3.
Business associates.
20

(a) Notwithstanding Sections 30 and 35 of this Act, a
21
covered entity may, without a patient's consent, disclose a
22
patient's genetic information
or biomarkers
to a business
23
associate and may allow a business associate to create,
24
receive, maintain, or transmit protected health information on

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1
its behalf, if the covered entity obtains, through a written
2
contract or other written agreement or arrangement that meets
3
the applicable requirements of 45 CFR 164.504(e), satisfactory
4
assurance that the business associate will appropriately
5
safeguard the information. A covered entity is not required to
6
obtain such satisfactory assurances from a business associate
7
that is a subcontractor.
8

(b) A business associate may disclose protected health
9
information to a business associate that is a subcontractor
10
and may allow the subcontractor to create, receive, maintain,
11
or transmit protected health information on its behalf, if the
12
business associate obtains satisfactory assurances, in
13
accordance with 45 CFR 164.504(e)(1)(i), that the
14
subcontractor will appropriately safeguard the information.
15
(Source: P.A. 98-1046, eff. 1-1-15
.)

16

(410 ILCS 513/31.5)
17

Sec. 31.5.
Use and disclosure of information to an HIE.

18
Notwithstanding the provisions of Section 30 and 35 of this
19
Act, a covered entity may, without a patient's consent,
20
disclose the identity of any patient upon whom a test is
21
performed and such patient's genetic information
or biomarkers

22
from a patient's record to a HIE if the disclosure is a
23
required or permitted disclosure to a business associate or is
24
a disclosure otherwise required or permitted under this Act.
25
An HIE may, without a patient's consent, use or disclose such

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1
information to the extent it is allowed to use or disclose such
2
information as a business associate in compliance with 45 CFR
3
164.502(e) or for such other purposes as are specifically
4
allowed under this Act.
5
(Source: P.A. 98-1046, eff. 1-1-15
.)

6

(410 ILCS 513/31.7)
7

Sec. 31.7.
Establishment and disclosure of limited data
8
sets and de-identified information.
9

(a) A covered entity may, without a genetic information
10
test
or biomarker test
subject's consent, create, use, and
11
disclose a limited data set using information subject to this
12
Act or disclose information subject to this Act to a business
13
associate for the purpose of establishing a limited data set.
14
The creation, use, and disclosure of such a limited data set
15
must comply with the requirements set forth under HIPAA.
16

(b) A covered entity may, without a genetic information
17
test
or biomarker test
subject's consent, create, use, and
18
disclose de-identified information using information subject
19
to this Act or disclose information subject to this Act to a
20
business associate for the purpose of de-identifying the
21
information. The creation, use, and disclosure of such
22
de-identified information must comply with the requirements
23
set forth under HIPAA. A covered entity or a business
24
associate may disclose information that is de-identified in
25
accordance with HIPAA.

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1

(c) The recipient of de-identified information shall not
2
re-identify de-identified information using any public or
3
private data source.
4
(Source: P.A. 98-1046, eff. 1-1-15
.)

5

(410 ILCS 513/31.8)
6

Sec. 31.8.
HIE opt out.
Section 9.6 of the Mental Health
7
and Developmental Disabilities Confidentiality Act is
8
incorporated herein by reference. In addition to the
9
requirements set out in Section 9.6 of the Mental Health and
10
Developmental Disabilities Confidentiality Act, at the time of
11
a patient's first encounter for genetic testing
or biomarker
12
testing
with a health care provider, health care professional,
13
or health facility that participates in an HIE, or, in the
14
event of a medical emergency that makes it impossible, as soon
15
thereafter as is practicable, the patient shall receive
16
meaningful disclosure regarding the HIE in which the health
17
care provider, health care professional, or health facility
18
participates and shall be afforded an opportunity to opt out
19
of disclosure of the patient's health information through the
20
HIE.
21
(Source: P.A. 98-1046, eff. 1-1-15
.)

22

(410 ILCS 513/31.9)
23

Sec. 31.9.
Research.
Genetic information
or biomarkers
may
24
be disclosed for research, in accordance with the requirements

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1
set forth under HIPAA.
2
(Source: P.A. 98-1046, eff. 1-1-15
.)

3

(410 ILCS 513/31.10)
4

Sec. 31.10.
Minimum necessary.
When using or disclosing
5
genetic-related
or biomarker-related
information under this
6
Act, a covered entity shall do so in accordance with the
7
minimum necessary standard under HIPAA.
8
(Source: P.A. 98-1046, eff. 1-1-15
.)

9

(410 ILCS 513/50)
10

Sec. 50.
Home rule.
Any home rule unit of local
11
government, any non-home rule municipality, or any non-home
12
rule county within the unincorporated territory of the county
13
may enact ordinances, standards, rules, or regulations that
14
protect
biomarker testing, biomarkers,
genetic information
,

15
and genetic testing in a manner or to an extent equal to or
16
greater than the protection provided in this Act. This Section
17
is a limitation on the concurrent exercise of home rule power
18
under subsection (i) of Section 6 of Article VII of the
19
Illinois Constitution.
20
(Source: P.A. 95-927, eff. 1-1-09.)

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1

INDEX

2

Statutes amended in order of appearance

3

410 ILCS 513/5
4

410 ILCS 513/10
5

410 ILCS 513/15
6

410 ILCS 513/20
7

410 ILCS 513/25
8

410 ILCS 513/30
9

410 ILCS 513/31
10

410 ILCS 513/31.1
11

410 ILCS 513/31.2
12

410 ILCS 513/31.3
13

410 ILCS 513/31.5
14

410 ILCS 513/31.7
15

410 ILCS 513/31.8
16

410 ILCS 513/31.9
17

410 ILCS 513/31.10
18

410 ILCS 513/50

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