Illinois General Assembly - Full Text of HB2189
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Full Text of HB2189  101st General Assembly




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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 10 and 20 as follows:
6    (410 ILCS 513/10)
7    Sec. 10. Definitions. As used in this Act:
8    "Authority" means the Illinois Health Information Exchange
9Authority established pursuant to the Illinois Health
10Information Exchange and Technology Act.
11    "Business associate" has the meaning ascribed to it under
12HIPAA, as specified in 45 CFR 160.103.
13    "Covered entity" has the meaning ascribed to it under
14HIPAA, as specified in 45 CFR 160.103.
15    "De-identified information" means health information that
16is not individually identifiable as described under HIPAA, as
17specified in 45 CFR 164.514(b).
18    "Disclosure" has the meaning ascribed to it under HIPAA, as
19specified in 45 CFR 160.103.
20    "Employer" means the State of Illinois, any unit of local
21government, and any board, commission, department,
22institution, or school district, any party to a public
23contract, any joint apprenticeship or training committee



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1within the State, and every other person employing employees
2within the State.
3    "Employment agency" means both public and private
4employment agencies and any person, labor organization, or
5labor union having a hiring hall or hiring office regularly
6undertaking, with or without compensation, to procure
7opportunities to work, or to procure, recruit, refer, or place
9    "Family member" means, with respect to an individual, (i)
10the spouse of the individual; (ii) a dependent child of the
11individual, including a child who is born to or placed for
12adoption with the individual; (iii) any other person qualifying
13as a covered dependent under a managed care plan; and (iv) all
14other individuals related by blood or law to the individual or
15the spouse or child described in subsections (i) through (iii)
16of this definition.
17    "Genetic information" has the meaning ascribed to it under
18HIPAA, as specified in 45 CFR 160.103.
19    "Genetic monitoring" means the periodic examination of
20employees to evaluate acquired modifications to their genetic
21material, such as chromosomal damage or evidence of increased
22occurrence of mutations that may have developed in the course
23of employment due to exposure to toxic substances in the
24workplace in order to identify, evaluate, and respond to
25effects of or control adverse environmental exposures in the



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1    "Genetic services" has the meaning ascribed to it under
2HIPAA, as specified in 45 CFR 160.103.
3    "Genetic testing" and "genetic test" have the meaning
4ascribed to "genetic test" under HIPAA, as specified in 45 CFR
5160.103. "Genetic testing" includes direct-to-consumer
6commercial genetic testing.
7    "Health care operations" has the meaning ascribed to it
8under HIPAA, as specified in 45 CFR 164.501.
9    "Health care professional" means (i) a licensed physician,
10(ii) a licensed physician assistant, (iii) a licensed advanced
11practice registered nurse, (iv) a licensed dentist, (v) a
12licensed podiatrist, (vi) a licensed genetic counselor, or
13(vii) an individual certified to provide genetic testing by a
14state or local public health department.
15    "Health care provider" has the meaning ascribed to it under
16HIPAA, as specified in 45 CFR 160.103.
17    "Health facility" means a hospital, blood bank, blood
18center, sperm bank, or other health care institution, including
19any "health facility" as that term is defined in the Illinois
20Finance Authority Act.
21    "Health information exchange" or "HIE" means a health
22information exchange or health information organization that
23exchanges health information electronically that (i) is
24established pursuant to the Illinois Health Information
25Exchange and Technology Act, or any subsequent amendments
26thereto, and any administrative rules promulgated thereunder;



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1(ii) has established a data sharing arrangement with the
2Authority; or (iii) as of August 16, 2013, was designated by
3the Authority Board as a member of, or was represented on, the
4Authority Board's Regional Health Information Exchange
5Workgroup; provided that such designation shall not require the
6establishment of a data sharing arrangement or other
7participation with the Illinois Health Information Exchange or
8the payment of any fee. In certain circumstances, in accordance
9with HIPAA, an HIE will be a business associate.
10    "Health oversight agency" has the meaning ascribed to it
11under HIPAA, as specified in 45 CFR 164.501.
12    "HIPAA" means the Health Insurance Portability and
13Accountability Act of 1996, Public Law 104-191, as amended by
14the Health Information Technology for Economic and Clinical
15Health Act of 2009, Public Law 111-05, and any subsequent
16amendments thereto and any regulations promulgated thereunder.
17    "Insurer" means (i) an entity that is subject to the
18jurisdiction of the Director of Insurance and (ii) a managed
19care plan.
20    "Labor organization" includes any organization, labor
21union, craft union, or any voluntary unincorporated
22association designed to further the cause of the rights of
23union labor that is constituted for the purpose, in whole or in
24part, of collective bargaining or of dealing with employers
25concerning grievances, terms or conditions of employment, or
26apprenticeships or applications for apprenticeships, or of



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1other mutual aid or protection in connection with employment,
2including apprenticeships or applications for apprenticeships.
3    "Licensing agency" means a board, commission, committee,
4council, department, or officers, except a judicial officer, in
5this State or any political subdivision authorized to grant,
6deny, renew, revoke, suspend, annul, withdraw, or amend a
7license or certificate of registration.
8    "Limited data set" has the meaning ascribed to it under
9HIPAA, as described in 45 CFR 164.514(e)(2).
10    "Managed care plan" means a plan that establishes,
11operates, or maintains a network of health care providers that
12have entered into agreements with the plan to provide health
13care services to enrollees where the plan has the ultimate and
14direct contractual obligation to the enrollee to arrange for
15the provision of or pay for services through:
16        (1) organizational arrangements for ongoing quality
17    assurance, utilization review programs, or dispute
18    resolution; or
19        (2) financial incentives for persons enrolled in the
20    plan to use the participating providers and procedures
21    covered by the plan.
22    A managed care plan may be established or operated by any
23entity including a licensed insurance company, hospital or
24medical service plan, health maintenance organization, limited
25health service organization, preferred provider organization,
26third party administrator, or an employer or employee



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2    "Minimum necessary" means HIPAA's standard for using,
3disclosing, and requesting protected health information found
4in 45 CFR 164.502(b) and 164.514(d).
5    "Nontherapeutic purpose" means a purpose that is not
6intended to improve or preserve the life or health of the
7individual whom the information concerns.
8    "Organized health care arrangement" has the meaning
9ascribed to it under HIPAA, as specified in 45 CFR 160.103.
10    "Patient safety activities" has the meaning ascribed to it
11under 42 CFR 3.20.
12    "Payment" has the meaning ascribed to it under HIPAA, as
13specified in 45 CFR 164.501.
14    "Person" includes any natural person, partnership,
15association, joint venture, trust, governmental entity, public
16or private corporation, health facility, or other legal entity.
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.
26    "Treatment" has the meaning ascribed to it under HIPAA, as



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1specified in 45 CFR 164.501.
2    "Use" has the meaning ascribed to it under HIPAA, as
3specified in 45 CFR 160.103, where context dictates.
4(Source: P.A. 99-173, eff. 7-29-15; 100-513, eff. 1-1-18.)
5    (410 ILCS 513/20)
6    Sec. 20. Use of genetic testing information for insurance
8    (a) An insurer may not seek information derived from
9genetic testing for use in connection with a policy of accident
10and health insurance. Except as provided in subsection (c), an
11insurer that receives information derived from genetic
12testing, regardless of the source of that information, may not
13use the information for a nontherapeutic purpose as it relates
14to a policy of accident and health insurance.
15    (b) An insurer shall not use or disclose protected health
16information that is genetic information for underwriting
17purposes. For purposes of this Section, "underwriting
18purposes" means, with respect to an insurer:
19        (1) rules for, or determination of, eligibility
20    (including enrollment and continued eligibility) for, or
21    determination of, benefits under the plan, coverage, or
22    policy (including changes in deductibles or other
23    cost-sharing mechanisms in return for activities such as
24    completing a health risk assessment or participating in a
25    wellness program);



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1        (2) the computation of premium or contribution amounts
2    under the plan, coverage, or policy (including discounts,
3    rebates, payments in kind, or other premium differential
4    mechanisms in return for activities, such as completing a
5    health risk assessment or participating in a wellness
6    program);
7        (3) the application of any pre-existing condition
8    exclusion under the plan, coverage, or policy; and
9        (4) other activities related to the creation, renewal,
10    or replacement of a contract of health insurance or health
11    benefits.
12    "Underwriting purposes" does not include determinations of
13medical appropriateness where an individual seeks a benefit
14under the plan, coverage, or policy.
15    This subsection (b) does not apply to insurers that are
16issuing a long-term care policy, excluding a nursing home fixed
17indemnity plan.
18    (c) An insurer may consider the results of genetic testing
19in connection with a policy of accident and health insurance if
20the individual voluntarily submits the results and the results
21are favorable to the individual.
22    (d) An insurer that possesses information derived from
23genetic testing may not release the information to a third
24party, except as specified in this Act.
25    (e) A company providing direct-to-consumer commercial
26genetic testing is prohibited from sharing any genetic test



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1information or other personally identifiable information about
2a consumer with any health or life insurance company without
3written consent from the consumer.
4(Source: P.A. 98-1046, eff. 1-1-15.)