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


Rep. Natalie A. Manley

Filed: 2/28/2019





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2    AMENDMENT NO. ______. Amend House Bill 2189 by replacing
3everything after the enacting clause with the following:
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



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1specified in 45 CFR 164.514(b).
2    "Disclosure" has the meaning ascribed to it under HIPAA, as
3specified in 45 CFR 160.103.
4    "Employer" means the State of Illinois, any unit of local
5government, and any board, commission, department,
6institution, or school district, any party to a public
7contract, any joint apprenticeship or training committee
8within the State, and every other person employing employees
9within the State.
10    "Employment agency" means both public and private
11employment agencies and any person, labor organization, or
12labor union having a hiring hall or hiring office regularly
13undertaking, with or without compensation, to procure
14opportunities to work, or to procure, recruit, refer, or place
16    "Family member" means, with respect to an individual, (i)
17the spouse of the individual; (ii) a dependent child of the
18individual, including a child who is born to or placed for
19adoption with the individual; (iii) any other person qualifying
20as a covered dependent under a managed care plan; and (iv) all
21other individuals related by blood or law to the individual or
22the spouse or child described in subsections (i) through (iii)
23of this definition.
24    "Genetic information" has the meaning ascribed to it under
25HIPAA, as specified in 45 CFR 160.103.
26    "Genetic monitoring" means the periodic examination of



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1employees to evaluate acquired modifications to their genetic
2material, such as chromosomal damage or evidence of increased
3occurrence of mutations that may have developed in the course
4of employment due to exposure to toxic substances in the
5workplace in order to identify, evaluate, and respond to
6effects of or control adverse environmental exposures in the
8    "Genetic services" has the meaning ascribed to it under
9HIPAA, as specified in 45 CFR 160.103.
10    "Genetic testing" and "genetic test" have the meaning
11ascribed to "genetic test" under HIPAA, as specified in 45 CFR
12160.103. "Genetic testing" includes direct-to-consumer
13commercial genetic testing.
14    "Health care operations" has the meaning ascribed to it
15under HIPAA, as specified in 45 CFR 164.501.
16    "Health care professional" means (i) a licensed physician,
17(ii) a licensed physician assistant, (iii) a licensed advanced
18practice registered nurse, (iv) a licensed dentist, (v) a
19licensed podiatrist, (vi) a licensed genetic counselor, or
20(vii) an individual certified to provide genetic testing by a
21state or local public health department.
22    "Health care provider" has the meaning ascribed to it under
23HIPAA, as specified in 45 CFR 160.103.
24    "Health facility" means a hospital, blood bank, blood
25center, sperm bank, or other health care institution, including
26any "health facility" as that term is defined in the Illinois



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1Finance Authority Act.
2    "Health information exchange" or "HIE" means a health
3information exchange or health information organization that
4exchanges health information electronically that (i) is
5established pursuant to the Illinois Health Information
6Exchange and Technology Act, or any subsequent amendments
7thereto, and any administrative rules promulgated thereunder;
8(ii) has established a data sharing arrangement with the
9Authority; or (iii) as of August 16, 2013, was designated by
10the Authority Board as a member of, or was represented on, the
11Authority Board's Regional Health Information Exchange
12Workgroup; provided that such designation shall not require the
13establishment of a data sharing arrangement or other
14participation with the Illinois Health Information Exchange or
15the payment of any fee. In certain circumstances, in accordance
16with HIPAA, an HIE will be a business associate.
17    "Health oversight agency" has the meaning ascribed to it
18under HIPAA, as specified in 45 CFR 164.501.
19    "HIPAA" means the Health Insurance Portability and
20Accountability Act of 1996, Public Law 104-191, as amended by
21the Health Information Technology for Economic and Clinical
22Health Act of 2009, Public Law 111-05, and any subsequent
23amendments thereto and any regulations promulgated thereunder.
24    "Insurer" means (i) an entity that is subject to the
25jurisdiction of the Director of Insurance and (ii) a managed
26care plan.



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1    "Labor organization" includes any organization, labor
2union, craft union, or any voluntary unincorporated
3association designed to further the cause of the rights of
4union labor that is constituted for the purpose, in whole or in
5part, of collective bargaining or of dealing with employers
6concerning grievances, terms or conditions of employment, or
7apprenticeships or applications for apprenticeships, or of
8other mutual aid or protection in connection with employment,
9including apprenticeships or applications for apprenticeships.
10    "Licensing agency" means a board, commission, committee,
11council, department, or officers, except a judicial officer, in
12this State or any political subdivision authorized to grant,
13deny, renew, revoke, suspend, annul, withdraw, or amend a
14license or certificate of registration.
15    "Limited data set" has the meaning ascribed to it under
16HIPAA, as described in 45 CFR 164.514(e)(2).
17    "Managed care plan" means a plan that establishes,
18operates, or maintains a network of health care providers that
19have entered into agreements with the plan to provide health
20care services to enrollees where the plan has the ultimate and
21direct contractual obligation to the enrollee to arrange for
22the provision of or pay for services through:
23        (1) organizational arrangements for ongoing quality
24    assurance, utilization review programs, or dispute
25    resolution; or
26        (2) financial incentives for persons enrolled in the



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1    plan to use the participating providers and procedures
2    covered by the plan.
3    A managed care plan may be established or operated by any
4entity including a licensed insurance company, hospital or
5medical service plan, health maintenance organization, limited
6health service organization, preferred provider organization,
7third party administrator, or an employer or employee
9    "Minimum necessary" means HIPAA's standard for using,
10disclosing, and requesting protected health information found
11in 45 CFR 164.502(b) and 164.514(d).
12    "Nontherapeutic purpose" means a purpose that is not
13intended to improve or preserve the life or health of the
14individual whom the information concerns.
15    "Organized health care arrangement" has the meaning
16ascribed to it under HIPAA, as specified in 45 CFR 160.103.
17    "Patient safety activities" has the meaning ascribed to it
18under 42 CFR 3.20.
19    "Payment" has the meaning ascribed to it under HIPAA, as
20specified in 45 CFR 164.501.
21    "Person" includes any natural person, partnership,
22association, joint venture, trust, governmental entity, public
23or private corporation, health facility, or other legal entity.
24    "Protected health information" has the meaning ascribed to
25it under HIPAA, as specified in 45 CFR 164.103.
26    "Research" has the meaning ascribed to it under HIPAA, as



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1specified in 45 CFR 164.501.
2    "State agency" means an instrumentality of the State of
3Illinois and any instrumentality of another state which
4pursuant to applicable law or a written undertaking with an
5instrumentality of the State of Illinois is bound to protect
6the privacy of genetic information of Illinois persons.
7    "Treatment" has the meaning ascribed to it under HIPAA, as
8specified in 45 CFR 164.501.
9    "Use" has the meaning ascribed to it under HIPAA, as
10specified in 45 CFR 160.103, where context dictates.
11(Source: P.A. 99-173, eff. 7-29-15; 100-513, eff. 1-1-18.)
12    (410 ILCS 513/20)
13    Sec. 20. Use of genetic testing information for insurance
15    (a) An insurer may not seek information derived from
16genetic testing for use in connection with a policy of accident
17and health insurance. Except as provided in subsection (c), an
18insurer that receives information derived from genetic
19testing, regardless of the source of that information, may not
20use the information for a nontherapeutic purpose as it relates
21to a policy of accident and health insurance.
22    (b) An insurer shall not use or disclose protected health
23information that is genetic information for underwriting
24purposes. For purposes of this Section, "underwriting
25purposes" means, with respect to an insurer:



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1        (1) rules for, or determination of, eligibility
2    (including enrollment and continued eligibility) for, or
3    determination of, benefits under the plan, coverage, or
4    policy (including changes in deductibles or other
5    cost-sharing mechanisms in return for activities such as
6    completing a health risk assessment or participating in a
7    wellness program);
8        (2) the computation of premium or contribution amounts
9    under the plan, coverage, or policy (including discounts,
10    rebates, payments in kind, or other premium differential
11    mechanisms in return for activities, such as completing a
12    health risk assessment or participating in a wellness
13    program);
14        (3) the application of any pre-existing condition
15    exclusion under the plan, coverage, or policy; and
16        (4) other activities related to the creation, renewal,
17    or replacement of a contract of health insurance or health
18    benefits.
19    "Underwriting purposes" does not include determinations of
20medical appropriateness where an individual seeks a benefit
21under the plan, coverage, or policy.
22    This subsection (b) does not apply to insurers that are
23issuing a long-term care policy, excluding a nursing home fixed
24indemnity plan.
25    (c) An insurer may consider the results of genetic testing
26in connection with a policy of accident and health insurance if



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1the individual voluntarily submits the results and the results
2are favorable to the individual.
3    (d) An insurer that possesses information derived from
4genetic testing may not release the information to a third
5party, except as specified in this Act.
6    (e) A company providing direct-to-consumer commercial
7genetic testing is prohibited from sharing any genetic test
8information or other personally identifiable information about
9a consumer with any health or life insurance company without
10written consent from the consumer.
11(Source: P.A. 98-1046, eff. 1-1-15.)".