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1 | | AN ACT concerning health.
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2 | | Be it enacted by the People of the State of Illinois,
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3 | | represented in the General Assembly:
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4 | | Section 5. The Genetic Information Privacy Act is amended |
5 | | by changing Sections 10 and 20 as follows:
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6 | | (410 ILCS 513/10)
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7 | | Sec. 10. Definitions. As used in this Act:
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8 | | "Authority" means the Illinois Health Information Exchange |
9 | | Authority established pursuant to the Illinois Health |
10 | | Information Exchange and Technology Act. |
11 | | "Business associate" has the meaning ascribed to it under |
12 | | HIPAA, as specified in 45 CFR 160.103. |
13 | | "Covered entity" has the meaning ascribed to it under |
14 | | HIPAA, as specified in 45 CFR 160.103. |
15 | | "De-identified information" means health information that |
16 | | is not individually identifiable as described under HIPAA, as |
17 | | specified in 45 CFR 164.514(b). |
18 | | "Disclosure" has the meaning ascribed to it under HIPAA, as |
19 | | specified in 45 CFR 160.103. |
20 | | "Employer" means the State of Illinois, any unit of local |
21 | | government, and any board, commission, department, |
22 | | institution, or school district, any party to a public |
23 | | contract, any joint apprenticeship or training committee |
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1 | | within the State, and every other person employing employees |
2 | | within the State. |
3 | | "Employment agency" means both public and private |
4 | | employment agencies and any person, labor organization, or |
5 | | labor union having a hiring hall or hiring office regularly |
6 | | undertaking, with or without compensation, to procure |
7 | | opportunities to work, or to procure, recruit, refer, or place |
8 | | employees. |
9 | | "Family member" means, with respect to an individual, (i) |
10 | | the spouse of the individual; (ii) a dependent child of the |
11 | | individual, including a child who is born to or placed for |
12 | | adoption with the individual; (iii) any other person qualifying |
13 | | as a covered dependent under a managed care plan; and (iv) all |
14 | | other individuals related by blood or law to the individual or |
15 | | the spouse or child described in subsections (i) through (iii) |
16 | | of this definition. |
17 | | "Genetic information" has the meaning ascribed to it under |
18 | | HIPAA, as specified in 45 CFR 160.103. |
19 | | "Genetic monitoring" means the periodic examination of |
20 | | employees to evaluate acquired modifications to their genetic |
21 | | material, such as chromosomal damage or evidence of increased |
22 | | occurrence of mutations that may have developed in the course |
23 | | of employment due to exposure to toxic substances in the |
24 | | workplace in order to identify, evaluate, and respond to |
25 | | effects of or control adverse environmental exposures in the |
26 | | workplace. |
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1 | | "Genetic services" has the meaning ascribed to it under |
2 | | HIPAA, as specified in 45 CFR 160.103. |
3 | | "Genetic testing" and "genetic test" have the meaning |
4 | | ascribed to "genetic test" under HIPAA, as specified in 45 CFR |
5 | | 160.103. "Genetic testing" includes direct-to-consumer |
6 | | commercial genetic testing. |
7 | | "Health care operations" has the meaning ascribed to it |
8 | | under 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 |
11 | | practice registered nurse, (iv) a licensed dentist, (v) a |
12 | | licensed podiatrist, (vi) a licensed genetic counselor, or |
13 | | (vii) an individual certified to provide genetic testing by a |
14 | | state or local public health department. |
15 | | "Health care provider" has the meaning ascribed to it under |
16 | | HIPAA, as specified in 45 CFR 160.103. |
17 | | "Health facility" means a hospital, blood bank, blood |
18 | | center, sperm bank, or other health care institution, including |
19 | | any "health facility" as that term is defined in the Illinois |
20 | | Finance Authority Act. |
21 | | "Health information exchange" or "HIE" means a health |
22 | | information exchange or health information organization that |
23 | | exchanges health information electronically that (i) is |
24 | | established pursuant to the Illinois Health Information |
25 | | Exchange and Technology Act, or any subsequent amendments |
26 | | thereto, and any administrative rules promulgated thereunder; |
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1 | | (ii) has established a data sharing arrangement with the |
2 | | Authority; or (iii) as of August 16, 2013, was designated by |
3 | | the Authority Board as a member of, or was represented on, the |
4 | | Authority Board's Regional Health Information Exchange |
5 | | Workgroup; provided that such designation
shall not require the |
6 | | establishment of a data sharing arrangement or other |
7 | | participation with the Illinois Health
Information Exchange or |
8 | | the payment of any fee. In certain circumstances, in accordance |
9 | | with HIPAA, an HIE will be a business associate. |
10 | | "Health oversight agency" has the meaning ascribed to it |
11 | | under HIPAA, as specified in 45 CFR 164.501. |
12 | | "HIPAA" means the Health Insurance Portability and |
13 | | Accountability Act of 1996, Public Law 104-191, as amended by |
14 | | the Health Information Technology for Economic and Clinical |
15 | | Health Act of 2009, Public Law 111-05, and any subsequent |
16 | | amendments thereto and any regulations promulgated thereunder.
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17 | | "Insurer" means (i) an entity that is subject to the |
18 | | jurisdiction of the Director of Insurance and (ii) a
managed |
19 | | care plan.
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20 | | "Labor organization" includes any organization, labor |
21 | | union, craft union, or any voluntary unincorporated |
22 | | association designed to further the cause of the rights of |
23 | | union labor that is constituted for the purpose, in whole or in |
24 | | part, of collective bargaining or of dealing with employers |
25 | | concerning grievances, terms or conditions of employment, or |
26 | | apprenticeships or applications for apprenticeships, or of |
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1 | | other mutual aid or protection in connection with employment, |
2 | | including apprenticeships or applications for apprenticeships. |
3 | | "Licensing agency" means a board, commission, committee, |
4 | | council, department, or officers, except a judicial officer, in |
5 | | this State or any political subdivision authorized to grant, |
6 | | deny, renew, revoke, suspend, annul, withdraw, or amend a |
7 | | license or certificate of registration. |
8 | | "Limited data set" has the meaning ascribed to it under |
9 | | HIPAA, as described in 45 CFR 164.514(e)(2). |
10 | | "Managed care plan" means a plan that establishes, |
11 | | operates, or maintains a
network of health care providers that |
12 | | have entered into agreements with the
plan to provide health |
13 | | care services to enrollees where the plan has the
ultimate and |
14 | | direct contractual obligation to the enrollee to arrange for |
15 | | the
provision of or pay for services
through:
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16 | | (1) organizational arrangements for ongoing quality |
17 | | assurance,
utilization review programs, or dispute |
18 | | resolution; or
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19 | | (2) financial incentives for persons enrolled in the |
20 | | plan to use the
participating providers and procedures |
21 | | covered by the plan.
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22 | | A managed care plan may be established or operated by any |
23 | | entity including
a licensed insurance company, hospital or |
24 | | medical service plan, health
maintenance organization, limited |
25 | | health service organization, preferred
provider organization, |
26 | | third party administrator, or an employer or employee
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1 | | organization.
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2 | | "Minimum necessary" means HIPAA's standard for using, |
3 | | disclosing, and requesting protected health information found |
4 | | in 45 CFR 164.502(b) and 164.514(d). |
5 | | "Nontherapeutic purpose" means a purpose that is not |
6 | | intended to improve or preserve the life or health of the |
7 | | individual whom the information concerns. |
8 | | "Organized health care arrangement" has the meaning |
9 | | ascribed to it under HIPAA, as specified in 45 CFR 160.103. |
10 | | "Patient safety activities" has the meaning ascribed to it |
11 | | under 42 CFR 3.20. |
12 | | "Payment" has the meaning ascribed to it under HIPAA, as |
13 | | specified in 45 CFR 164.501. |
14 | | "Person" includes any natural person, partnership, |
15 | | association, joint venture, trust, governmental entity, public |
16 | | or private corporation, health facility, or other legal 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. |
26 | | "Treatment" has the meaning ascribed to it under HIPAA, as |
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1 | | specified in 45 CFR 164.501. |
2 | | "Use" has the meaning ascribed to it under HIPAA, as |
3 | | specified in 45 CFR 160.103, where context dictates. |
4 | | (Source: P.A. 99-173, eff. 7-29-15; 100-513, eff. 1-1-18 .)
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5 | | (410 ILCS 513/20)
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6 | | Sec. 20. Use of genetic testing information for insurance |
7 | | purposes.
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8 | | (a) An insurer may not seek information derived from |
9 | | genetic testing for use
in connection with a policy of accident |
10 | | and health insurance. Except as
provided in subsection (c), an |
11 | | insurer that receives information derived from
genetic |
12 | | testing, regardless of the source of that information, may not |
13 | | use
the information for a nontherapeutic purpose as it
relates |
14 | | to a policy of accident and health insurance.
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15 | | (b) An insurer shall not use or disclose protected health |
16 | | information that is genetic information for underwriting |
17 | | purposes. For purposes of this Section, "underwriting |
18 | | purposes" 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 |
13 | | medical appropriateness where an individual seeks a benefit |
14 | | under the plan, coverage, or policy. |
15 | | This subsection (b) does not apply to insurers that are |
16 | | issuing a long-term care policy, excluding a nursing home fixed |
17 | | indemnity plan. |
18 | | (c) An insurer may consider the results of genetic testing |
19 | | in connection
with a policy of accident and health insurance if |
20 | | the individual voluntarily
submits the results and the results |
21 | | are favorable to the individual.
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22 | | (d) An insurer that possesses information derived from |
23 | | genetic testing may
not release the information to a third |
24 | | party, except as specified in this Act.
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25 | | (e) A company providing direct-to-consumer commercial |
26 | | genetic testing is prohibited from sharing any genetic test |