HB 4556

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Full Text of HB4556
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	HB4556 - 104th General Assembly
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104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
HB4556
Introduced 1/30/2026, by Rep. Maurice A. West, II
SYNOPSIS AS INTRODUCED:
See Index
Amends the Genetic Information Privacy Act. Provides that the use of genetic testing, biomarker testing, or both (rather than only genetic testing), and the information derived from testing, is confidential and privileged and may be released only to the individual tested and persons specifically authorized in writing by the individual tested to receive the information. Provides that an insurer may not seek information derived from genetic or biomarker testing (rather than only genetic testing) for use in connection with a policy of accident or health insurance (unless the individual voluntarily submits the results and the results are favorable to the individual), for nontherapeutic purposes, or for underwriting purposes. In provisions concerning the use of testing information by employers, provides that an employer may release genetic testing or biomarker testing information (rather than only genetic testing information) under specified circumstances. Limits an employer's use of genetic information, genetic testing, biomarkers, and biomarker testing (rather than only genetic information and genetic testing). In provisions concerning testing, provides that no person may disclose or be compelled to disclose the identity of any person upon whom a genetic test or biomarker test (rather than only genetic test) is performed or the results of a genetic test or biomarker test (rather than only a genetic test) in a manner that permits identification of the subject of the test, except to the persons specified in the Act. Limits the concurrent exercise of home rule powers. Defines "biomarker" and "biomarker testing". Makes other and conforming changes.
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A BILL FOR
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1    AN ACT concerning health.
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
4    Section 5. The Genetic Information Privacy Act is amended
5by changing Sections 5, 10, 15, 20, 25, 30, 31, 31.1, 31.2,
631.3, 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
9finds 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
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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 
19356z.46 of the Illinois Insurance Code.
20    "Biomarker testing" has the meaning ascribed to it in 
21Section 356z.46 of the Illinois Insurance Code.
22    "Business associate" has the meaning ascribed to it under
23HIPAA, as specified in 45 CFR 160.103.
24    "Covered entity" has the meaning ascribed to it under
25HIPAA, as specified in 45 CFR 160.103.
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1    "De-identified information" means health information that
2is not individually identifiable as described under HIPAA, as
3specified in 45 CFR 164.514(b).
4    "Disclosure" has the meaning ascribed to it under HIPAA,
5as specified in 45 CFR 160.103.
6    "Employer" means the State of Illinois, any unit of local
7government, and any board, commission, department,
8institution, or school district, any party to a public
9contract, any joint apprenticeship or training committee
10within the State, and every other person employing employees
11within the State.
12    "Employment agency" means both public and private
13employment agencies and any person, labor organization, or
14labor union having a hiring hall or hiring office regularly
15undertaking, with or without compensation, to procure
16opportunities to work, or to procure, recruit, refer, or place
17employees.
18    "Family member" means, with respect to an individual, (i)
19the spouse of the individual; (ii) a dependent child of the
20individual, including a child who is born to or placed for
21adoption with the individual; (iii) any other person
22qualifying as a covered dependent under a managed care plan;
23and (iv) all other individuals related by blood or law to the
24individual or the spouse or child described in subsections (i)
25through (iii) of this definition.
26    "Genetic information" has the meaning ascribed to it under
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1HIPAA, as specified in 45 CFR 160.103.
2    "Genetic monitoring" means the periodic examination of
3employees to evaluate acquired modifications to their genetic
4material, such as chromosomal damage or evidence of increased
5occurrence of mutations that may have developed in the course
6of employment due to exposure to toxic substances in the
7workplace in order to identify, evaluate, and respond to
8effects of or control adverse environmental exposures in the
9workplace.
10    "Genetic services" has the meaning ascribed to it under
11HIPAA, as specified in 45 CFR 160.103.
12    "Genetic testing" and "genetic test" have the meaning
13ascribed to "genetic test" under HIPAA, as specified in 45 CFR
14160.103. "Genetic testing" includes direct-to-consumer
15commercial genetic testing.
16    "Health care operations" has the meaning ascribed to it
17under 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
20practice registered nurse, (iv) a licensed dentist, (v) a
21licensed podiatric physician, (vi) a licensed genetic
22counselor, or (vii) an individual certified to provide genetic
23testing by a state or local public health department.
24    "Health care provider" has the meaning ascribed to it
25under HIPAA, as specified in 45 CFR 160.103.
26    "Health facility" means a hospital, blood bank, blood
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1center, sperm bank, or other health care institution,
2including any "health facility" as that term is defined in the
3Illinois Finance Authority Act.
4    "Health information exchange" or "HIE" means a health
5information exchange or health information organization that
6exchanges health information electronically. In certain
7circumstances, in accordance with HIPAA, an HIE will be a
8business associate.
9    "Health oversight agency" has the meaning ascribed to it
10under HIPAA, as specified in 45 CFR 164.501.
11    "HIPAA" means the Health Insurance Portability and
12Accountability Act of 1996, Public Law 104-191, as amended by
13the Health Information Technology for Economic and Clinical
14Health Act of 2009, Public Law 111-05, and any subsequent
15amendments thereto and any regulations promulgated thereunder.
16    "Insurer" means (i) an entity that is subject to the
17jurisdiction of the Director of Insurance and (ii) a managed
18care plan.
19    "Labor organization" includes any organization, labor
20union, craft union, or any voluntary unincorporated
21association designed to further the cause of the rights of
22union labor that is constituted for the purpose, in whole or in
23part, of collective bargaining or of dealing with employers
24concerning grievances, terms or conditions of employment, or
25apprenticeships or applications for apprenticeships, or of
26other mutual aid or protection in connection with employment,
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1including apprenticeships or applications for apprenticeships.
2    "Licensing agency" means a board, commission, committee,
3council, department, or officers, except a judicial officer,
4in this State or any political subdivision authorized to
5grant, deny, renew, revoke, suspend, annul, withdraw, or amend
6a license or certificate of registration.
7    "Limited data set" has the meaning ascribed to it under
8HIPAA, as described in 45 CFR 164.514(e)(2).
9    "Managed care plan" means a plan that establishes,
10operates, or maintains a network of health care providers that
11have entered into agreements with the plan to provide health
12care services to enrollees where the plan has the ultimate and
13direct contractual obligation to the enrollee to arrange for
14the 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
22entity including a licensed insurance company, hospital or
23medical service plan, health maintenance organization, limited
24health service organization, preferred provider organization,
25third party administrator, or an employer or employee
26organization.
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1    "Minimum necessary" means HIPAA's standard for using,
2disclosing, and requesting protected health information found
3in 45 CFR 164.502(b) and 164.514(d).
4    "Nontherapeutic purpose" means a purpose that is not
5intended to improve or preserve the life or health of the
6individual whom the information concerns.
7    "Organized health care arrangement" has the meaning
8ascribed to it under HIPAA, as specified in 45 CFR 160.103.
9    "Patient safety activities" has the meaning ascribed to it
10under 42 CFR 3.20.
11    "Payment" has the meaning ascribed to it under HIPAA, as
12specified in 45 CFR 164.501.
13    "Person" includes any natural person, partnership,
14association, joint venture, trust, governmental entity, public
15or private corporation, health facility, or other legal
16entity.
17    "Protected health information" has the meaning ascribed to
18it under HIPAA, as specified in 45 CFR 164.103.
19    "Research" has the meaning ascribed to it under HIPAA, as
20specified in 45 CFR 164.501.
21    "State agency" means an instrumentality of the State of
22Illinois and any instrumentality of another state which
23pursuant to applicable law or a written undertaking with an
24instrumentality of the State of Illinois is bound to protect
25the privacy of genetic information of Illinois persons or 
26biomarkers of Illinois persons.
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1    "Treatment" has the meaning ascribed to it under HIPAA, as
2specified in 45 CFR 164.501.
3    "Use" has the meaning ascribed to it under HIPAA, as
4specified 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 
9testing, information derived from biomarker testing, genetic
10testing, and information derived from genetic testing are [is]
11confidential and privileged and may be released only to the
12individual tested and to persons specifically authorized, in
13writing in accordance with Section 30, by that individual to
14receive the information. Except as otherwise provided in
15subsection (b) and in Section 30, this information shall not
16be admissible as evidence, nor discoverable in any action of
17any kind in any court, or before any tribunal, board, agency,
18or person pursuant to Part 21 of Article VIII of the Code of
19Civil Procedure. No liability shall attach to any hospital,
20physician, or other health care provider for compliance with
21the provisions of this Act including a specific written
22release by the individual in accordance with this Act.
23    (b) When a biological sample is legally obtained by a
24peace officer for use in a criminal investigation or
25prosecution, information derived from genetic testing of that
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1sample may be disclosed for identification purposes to
2appropriate law enforcement authorities conducting the
3investigation or prosecution and may be used in accordance
4with Section 5-4-3 of the Unified Code of Corrections. The
5information may be used for identification purposes during the
6course of the investigation or prosecution with respect to the
7individual tested without the consent of the individual and
8shall be admissible as evidence in court.
9    The information shall be confidential and may be disclosed
10only for purposes of criminal investigation or prosecution.
11    Genetic testing and genetic information derived thereof
12shall be admissible as evidence and discoverable, subject to a
13protective order, in any actions alleging a violation of this
14Act, seeking to enforce Section 30 of this Act through the
15Illinois Insurance Code, alleging discriminatory genetic
16testing or use of genetic information under the Illinois Human
17Rights Act or the Illinois Civil Rights Act of 2003, or
18requesting a workers' compensation claim under the Workers'
19Compensation Act.
20    (c) If the subject of the information requested by law
21enforcement is found innocent of the offense or otherwise not
22criminally penalized, then the court records shall be expunged
23by the court within 30 days after the final legal proceeding.
24The court shall notify the subject of the information of the
25expungement of the records in writing.
26    (d) Results of genetic testing that indicate that the
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1individual tested is at the time of the test afflicted with a
2disease, whether or not currently symptomatic, are not subject
3to 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
7purposes.
8    (a) An insurer may not seek information derived from
9genetic testing or biomarker testing for use in connection
10with a policy of accident and health insurance. Except as
11provided in subsection (c), an insurer that receives
12information derived from genetic testing or biomarker testing,
13regardless of the source of that information, may not use the
14information for a nontherapeutic purpose as it relates to a
15policy of accident and health insurance.
16    (b) An insurer shall not use or disclose protected health
17information that is genetic information or a biomarker for
18underwriting 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
		HB4556	- 11 -	LRB104 18990 TRT 32435 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
14medical appropriateness where an individual seeks a benefit
15under the plan, coverage, or policy.
16    This subsection (b) does not apply to insurers that are
17issuing a long-term care policy, excluding a nursing home
18fixed indemnity plan.
19    (c) An insurer may consider the results of genetic testing
20or biomarker testing in connection with a policy of accident
21and health insurance if the individual voluntarily submits the
22results and the results are favorable to the individual.
23    (d) An insurer that possesses information derived from
24genetic testing or biomarker testing may not release the
25information to a third party, except as specified in this Act.
26    (e) A company providing direct-to-consumer commercial
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1genetic testing or biomarker testing is prohibited from
2sharing any genetic test information or biomarker information
3or other personally identifiable information about a consumer
4with any health or life insurance company without written
5consent 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 
9testing information by employers.
10    (a) An employer, employment agency, labor organization,
11and licensing agency shall treat genetic testing, [and] genetic
12information, biomarker testing, and biomarkers in such a
13manner that is consistent with the requirements of federal
14law, including but not limited to the Genetic Information
15Nondiscrimination Act of 2008, the Americans with Disabilities
16Act, Title VII of the Civil Rights Act of 1964, the Family and
17Medical Leave Act of 1993, the Occupational Safety and Health
18Act of 1970, the Federal Mine Safety and Health Act of 1977, or
19the Atomic Energy Act of 1954.
20    (b) An employer may release genetic testing or biomarker 
21testing information only in accordance with this Act.
22    (c) An employer, employment agency, labor organization,
23and licensing agency shall not directly or indirectly do any
24of the following:
25        (1) solicit, request, require, or purchase biomarker 
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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
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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,
5prospective employer, employment agency, labor organization,
6or licensing agency, or its employees, agents, or members
7offering the person employment, labor organization membership,
8licensure, or any pay or benefit in return for taking a genetic
9test or biomarker test is prohibited.
10    (e) An employer shall not use biomarker testing, 
11biomarkers, genetic information, or genetic testing in
12furtherance of a workplace wellness program benefiting
13employees unless (1) health or genetic services are offered by
14the employer, (2) the employee provides written authorization
15in accordance with Section 30 of this Act, (3) only the
16employee or family member if the family member is receiving
17genetic services and the licensed health care professional or
18licensed genetic counselor involved in providing such services
19receive individually identifiable information concerning the
20results of such services, and (4) any individually
21identifiable information is only available for purposes of
22such services and shall not be disclosed to the employer
23except in aggregate terms that do not disclose the identity of
24specific employees. An employer shall not penalize an employee
25who does not disclose his or her genetic information or 
26biomarkers or does not choose to participate in a program
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1requiring disclosure of the employee's genetic information or 
2biomarkers.
3    (f) Nothing in this Act shall be construed to prohibit
4biomarker testing or genetic testing of an employee who
5requests a biomarker test or genetic test and who provides
6written authorization, in accordance with Section 30 of this
7Act, from taking a biomarker test or genetic test for the
8purpose of initiating a workers' compensation claim under the
9Workers' Compensation Act.
10    (g) A purchase of commercially and publicly available
11documents, including newspapers, magazines, periodicals, and
12books but not including medical databases or court records or
13inadvertently requesting family medical history by an
14employer, employment agency, labor organization, and licensing
15agency does not violate this Act.
16    (h) Nothing in this Act shall be construed to prohibit an
17employer that conducts DNA analysis for law enforcement
18purposes as a forensic laboratory and that includes such
19analysis in the Combined DNA Index System pursuant to the
20federal Violent Crime Control and Law Enforcement Act of 1994
21from requesting or requiring genetic testing or genetic
22information of such employer's employees, but only to the
23extent that such genetic testing or genetic information is
24used for analysis of DNA identification markers for quality
25control to detect sample contamination.
26    (i) Nothing in this Act shall be construed to prohibit an
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1employer from requesting or requiring genetic information to
2be used for genetic monitoring of the biological effects of
3toxic substances in the workplace, but only if (1) the
4employer provides written notice of the genetic monitoring to
5the employee; (2) the employee provides written authorization
6under Section 30 of this Act or the genetic monitoring is
7required by federal or State law; (3) the employee is informed
8of individual monitoring results; (4) the monitoring is in
9compliance with any federal genetic monitoring regulations or
10State genetic monitoring regulations under the authority of
11the federal Occupational Safety and Health Act of 1970; and
12(5) the employer, excluding any health care provider, health
13care professional, or health facility that is involved in the
14genetic monitoring program, receives the results of the
15monitoring only in aggregate terms that do not disclose the
16identity of specific employees.
17    (j) Despite lawful acquisition of biomarker testing, 
18biomarkers, genetic testing, or genetic information under
19subsections (e) through (i) of this Section, an employer,
20employment agency, labor organization, and licensing agency
21still may not use or disclose the biomarker test, biomarkers,
22genetic 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
25interpret for an employer, employment agency, labor
26organization, or licensing agency, or its employees, agents,
		HB4556	- 17 -	LRB104 18990 TRT 32435 b
1or members, a biomarker test or genetic test of an employee,
2labor organization member, or license holder, or of a
3prospective 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
8identity of any person upon whom a genetic test or biomarker 
9test is performed or the results of a genetic test or biomarker 
10test in a manner that permits identification of the subject of
11the 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
		HB4556	- 18 -	LRB104 18990 TRT 32435 b
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
		HB4556	- 19 -	LRB104 18990 TRT 32435 b
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,
23local health authority, or health oversight agency pertaining
24to genetic information or biomarkers shall be strictly
25confidential and exempt from copying and inspection under the
26Freedom of Information Act. The information and records shall
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1not be released or made public by the State agency, local
2health authority, or health oversight agency and shall not be
3admissible as evidence nor discoverable in any action of any
4kind in any court or before any tribunal, board, agency, or
5person and shall be treated in the same manner as the
6information and those records subject to the provisions of
7Part 21 of Article VIII of the Code of Civil Procedure except
8under 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
18know the information, and no additional disclosures may be
19made.
20    (c) Disclosure by an insurer in accordance with the
21requirements of the Article XL of the Illinois Insurance Code
22shall 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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1health care operations. Notwithstanding Sections 30 and 35 of
2this 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
21activities.
22    (a) Notwithstanding Sections 30 and 35 of this Act, a
23covered entity may disclose genetic information or biomarkers,
24without a patient's consent, to a health oversight agency for
25health oversight activities authorized by law, including
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1audits, civil, administrative, or criminal investigations;
2inspections; licensure or disciplinary actions; civil
3administrative or criminal proceedings or actions; or other
4activities necessary for appropriate oversight of (i) the
5health care system; (ii) government benefit programs for which
6health information is relevant to beneficiary eligibility;
7(iii) entities subject to government regulatory programs for
8which health information is necessary for determining
9compliance with program standards; or (iv) entities subject to
10civil rights laws for which health information is necessary
11for determining compliance.
12    (b) For purposes of the disclosures permitted by this
13Section, a health oversight activity does not include an
14investigation or other activity in which the individual is the
15subject of the investigation or activity and such
16investigation or other activity does not arise out of and is
17not directly related to (i) the receipt of health care; (ii) a
18claim for public benefits related to health; or (iii)
19qualification for, or receipt of, public benefits or services
20when a patient's health is integral to the claim for public
21benefits or services, except that, if a health oversight
22activity or investigation is conducted in conjunction with an
23oversight activity or investigation relating to a claim for
24public benefits not related to health, the joint activity or
25investigation is considered a health oversight activity for
26purposes of this Section.
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1    (c) If a covered entity is also a health oversight agency,
2the covered entity may use genetic information or biomarkers
3for 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
7activities. Notwithstanding Sections 30 and 35 of this Act,
8genetic information or biomarkers may be disclosed without a
9patient's consent for public health activities and purposes to
10the Department, when the Department is authorized by law to
11collect or receive such information for the purpose of
12preventing or controlling disease, injury, or disability,
13including, but not limited to, the reporting of disease,
14injury, vital events such as birth or death, and the conduct of
15public health surveillance, public health investigations, and
16public 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
21covered entity may, without a patient's consent, disclose a
22patient's genetic information or biomarkers to a business
23associate and may allow a business associate to create,
24receive, maintain, or transmit protected health information on
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1its behalf, if the covered entity obtains, through a written
2contract or other written agreement or arrangement that meets
3the applicable requirements of 45 CFR 164.504(e), satisfactory
4assurance that the business associate will appropriately
5safeguard the information. A covered entity is not required to
6obtain such satisfactory assurances from a business associate
7that is a subcontractor.
8    (b) A business associate may disclose protected health
9information to a business associate that is a subcontractor
10and may allow the subcontractor to create, receive, maintain,
11or transmit protected health information on its behalf, if the
12business associate obtains satisfactory assurances, in
13accordance with 45 CFR 164.504(e)(1)(i), that the
14subcontractor 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.
18Notwithstanding the provisions of Section 30 and 35 of this
19Act, a covered entity may, without a patient's consent,
20disclose the identity of any patient upon whom a test is
21performed and such patient's genetic information or biomarkers
22from a patient's record to a HIE if the disclosure is a
23required or permitted disclosure to a business associate or is
24a disclosure otherwise required or permitted under this Act.
25An HIE may, without a patient's consent, use or disclose such
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1information to the extent it is allowed to use or disclose such
2information as a business associate in compliance with 45 CFR
3164.502(e) or for such other purposes as are specifically
4allowed 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
8sets and de-identified information.
9    (a) A covered entity may, without a genetic information
10test or biomarker test subject's consent, create, use, and
11disclose a limited data set using information subject to this
12Act or disclose information subject to this Act to a business
13associate for the purpose of establishing a limited data set.
14The creation, use, and disclosure of such a limited data set
15must comply with the requirements set forth under HIPAA.
16    (b) A covered entity may, without a genetic information
17test or biomarker test subject's consent, create, use, and
18disclose de-identified information using information subject
19to this Act or disclose information subject to this Act to a
20business associate for the purpose of de-identifying the
21information. The creation, use, and disclosure of such
22de-identified information must comply with the requirements
23set forth under HIPAA. A covered entity or a business
24associate may disclose information that is de-identified in
25accordance with HIPAA.
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1    (c) The recipient of de-identified information shall not
2re-identify de-identified information using any public or
3private 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
7and Developmental Disabilities Confidentiality Act is
8incorporated herein by reference. In addition to the
9requirements set out in Section 9.6 of the Mental Health and
10Developmental Disabilities Confidentiality Act, at the time of
11a patient's first encounter for genetic testing or biomarker 
12testing with a health care provider, health care professional,
13or health facility that participates in an HIE, or, in the
14event of a medical emergency that makes it impossible, as soon
15thereafter as is practicable, the patient shall receive
16meaningful disclosure regarding the HIE in which the health
17care provider, health care professional, or health facility
18participates and shall be afforded an opportunity to opt out
19of disclosure of the patient's health information through the
20HIE.
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
24be disclosed for research, in accordance with the requirements
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1set 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
5genetic-related or biomarker-related information under this
6Act, a covered entity shall do so in accordance with the
7minimum 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
11government, any non-home rule municipality, or any non-home
12rule county within the unincorporated territory of the county
13may enact ordinances, standards, rules, or regulations that
14protect biomarker testing, biomarkers, genetic information,
15and genetic testing in a manner or to an extent equal to or
16greater than the protection provided in this Act. This Section
17is a limitation on the concurrent exercise of home rule power
18under subsection (i) of Section 6 of Article VII of the
19Illinois Constitution.
20(Source: P.A. 95-927, eff. 1-1-09.)
		HB4556	- 29 -	LRB104 18990 TRT 32435 b
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