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90_HB0008eng
New Act
215 ILCS 5/356t new
215 ILCS 125/5-3 from Ch. 111 1/2, par. 1411.2
215 ILCS 130/4003 from Ch. 73, par. 1504-3
215 ILCS 165/10 from Ch. 32, par. 604
Creates the Genetic Information Privacy Act. Provides
that information derived from genetic testing is
confidential. Limits the use of genetic information by
insurers and employers. Provides an exception to the
confidentiality of genetic information with respect to
criminal proceedings. Amends the Illinois Insurance Code,
the Health Maintenance Organization Act, the Limited Health
Service Organization Act, and the Voluntary Health Services
Plans Act to provide that entities regulated under those Acts
are subject to the Genetic Information Privacy Act.
LRB9000863JSgc
HB0008 Engrossed LRB9000863JSgc
1 AN ACT concerning genetic information, amending named
2 Acts.
3 Be it enacted by the People of the State of Illinois,
4 represented in the General Assembly:
5 Section 1. Short title. This Act may be cited as the
6 Genetic Information Privacy Act.
7 Section 5. Legislative findings; intent. The General
8 Assembly finds that:
9 (1) The use of genetic testing can be valuable to
10 an individual.
11 (2) Despite existing laws, regulations, and
12 professional standards which require or promote voluntary
13 and confidential use of genetic testing information, many
14 members of the public are deterred from seeking genetic
15 testing because of fear that test results will be
16 disclosed without consent or be used in a discriminatory
17 manner.
18 (3) The public health will be served by
19 facilitating voluntary and confidential nondiscriminatory
20 use of genetic testing information.
21 Section 10. Definitions. As used in this Act:
22 "Genetic testing" means a test of a person's genes, gene
23 products, or chromosomes for abnormalities or deficiencies,
24 including carrier status, that (i) are linked to physical or
25 mental disorders or impairments, (ii) indicate a
26 susceptibility to illness, disease, impairment, or other
27 disorders, whether physical or mental, or (iii) demonstrate
28 genetic or chromosomal damage due to environmental factors.
29 Genetic testing does not include routine physical
30 measurements; chemical, blood and urine analyses that are
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1 widely accepted and in use in clinical practice; tests for
2 use of drugs; and tests for the presence of the human
3 immunodeficiency virus.
4 "Insurer" means (i) an entity that transacts an insurance
5 business and (ii) a managed care plan.
6 "Managed care plan" means a plan that establishes,
7 operates, or maintains a network of health care providers
8 that have entered into agreements with the plan to provide
9 health care services to enrollees where the plan has the
10 ultimate and direct contractual obligation to the enrollee to
11 arrange for the provision of or pay for services through:
12 (1) organizational arrangements for ongoing quality
13 assurance, utilization review programs, or dispute
14 resolution; or
15 (2) financial incentives for persons enrolled in
16 the plan to use the participating providers and
17 procedures covered by the plan.
18 A managed care plan may be established or operated by any
19 entity including a licensed insurance company, hospital or
20 medical service plan, health maintenance organization,
21 limited health service organization, preferred provider
22 organization, third party administrator, or an employer or
23 employee organization.
24 Section 15. Confidentiality of genetic information.
25 (a) Except as otherwise provided in this Act, genetic
26 testing and information derived from genetic testing is
27 confidential and privileged and may be released only to the
28 individual tested and to persons specifically authorized, in
29 writing in accordance with Section 30, by that individual to
30 receive the information. Except as otherwise provided in
31 subsection (b) and in Section 30, this information shall not
32 be admissible as evidence, nor discoverable in any action of
33 any kind in any court, or before any tribunal, board, agency,
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1 or person pursuant to Part 21 of Article VIII of the Code of
2 Civil Procedure. No liability shall attach to any hospital,
3 physician, or other health care provider for compliance with
4 the provisions of this Act including a specific written
5 release by the individual in accordance with this Act.
6 (b) When a biological sample is legally obtained by a
7 peace officer for use in a criminal investigation or
8 prosecution, information derived from genetic testing of that
9 sample may be disclosed for identification purposes to
10 appropriate law enforcement authorities conducting the
11 investigation or prosecution and may be used in accordance
12 with Section 5-4-3 of the Unified Code of Corrections. The
13 information may be used for identification purposes during
14 the course of the investigation or prosecution with respect
15 to the individual tested without the consent of the
16 individual and shall be admissible as evidence in court.
17 The information shall be confidential and may be
18 disclosed only for purposes of criminal investigation or
19 prosecution.
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
23 expunged by the court within 30 days after the final legal
24 proceeding. The court shall notify the subject of the
25 information of the expungement of the records in writing.
26 (d) Results of genetic testing that indicate that the
27 individual tested is at the time of the test afflicted with a
28 disease, whether or not currently symptomatic, are not
29 subject to the confidentiality requirements of this Act.
30 Section 20. Use of genetic testing information for
31 insurance purposes.
32 (a) An insurer may not seek information derived from
33 genetic testing for use in connection with a policy of
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1 accident and health insurance. Except as provided in
2 subsection (b), an insurer that receives information derived
3 from genetic testing may not use the information for a
4 nontherapeutic purpose as it relates to a policy of accident
5 and health insurance.
6 (b) An insurer may consider the results of genetic
7 testing in connection with a policy of accident and health
8 insurance if the individual voluntarily submits the results
9 and the results are favorable to the individual.
10 (c) An insurer that possesses information derived from
11 genetic testing may not release the information to a third
12 party, except as specified in Section 30.
13 Section 22. Tests to determine inherited characteristics
14 in paternity proceedings. Nothing in this Act shall be
15 construed to affect or restrict in any way the ordering of or
16 use of results from deoxyribonucleic acid (DNA) testing or
17 other tests to determine inherited characteristics by the
18 court in a judicial proceeding under the Illinois Parentage
19 Act of 1984 or by the Illinois Department of Public Aid in an
20 administrative paternity proceeding under Article X of the
21 Illinois Public Aid Code and rules promulgated under that
22 Article.
23 Section 25. Use of genetic testing information by
24 employers.
25 (a) An employer shall treat genetic testing information
26 in such a manner that is consistent with the requirements of
27 federal law, including but not limited to the Americans with
28 Disabilities Act.
29 (b) An employer may release genetic testing information
30 only in accordance with Section 30.
31 Section 30. Disclosure of person tested and test
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1 results.
2 (a) No person may disclose or be compelled to disclose
3 the identity of any person upon whom a genetic test is
4 performed or the results of a genetic test in a manner that
5 permits identification of the subject of the test, except to
6 the following persons:
7 (1) The subject of the test or the subject's
8 legally authorized representative. This paragraph does
9 not create a duty or obligation under which a health care
10 provider must notify the subject's spouse or legal
11 guardian of the test results, and no such duty or
12 obligation shall be implied. No civil liability or
13 criminal sanction under this Act shall be imposed for any
14 disclosure or nondisclosure of a test result to a spouse
15 by a physician acting in good faith under this paragraph.
16 For the purpose of any proceedings, civil or criminal,
17 the good faith of any physician acting under this
18 paragraph shall be presumed.
19 (2) Any person designated in a specific written
20 legally effective release of the test results executed by
21 the subject of the test or the subject's legally
22 authorized representative.
23 (3) An authorized agent or employee of a health
24 facility or health care provider if the health facility
25 or health care provider itself is authorized to obtain
26 the test results, the agent or employee provides patient
27 care, and the agent or employee has a need to know the
28 information in order to conduct the tests or provide care
29 or treatment.
30 (4) A health facility or health care provider that
31 procures, processes, distributes, or uses:
32 (A) a human body part from a deceased person
33 with respect to medical information regarding that
34 person; or
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1 (B) semen provided prior to the effective date
2 of this Act for the purpose of artificial
3 insemination.
4 (5) Health facility staff committees for the
5 purposes of conducting program monitoring, program
6 evaluation, or service reviews.
7 (6) In the case of a minor under 18 years of age,
8 the health care provider who ordered the test shall make
9 a reasonable effort to notify the minor's parent or legal
10 guardian if, in the professional judgment of the health
11 care provider, notification would be in the best interest
12 of the minor and the health care provider has first
13 sought unsuccessfully to persuade the minor to notify the
14 parent or legal guardian or after a reasonable time after
15 the minor has agreed to notify the parent or legal
16 guardian, the health care provider has reason to believe
17 that the minor has not made the notification. This
18 paragraph shall not create a duty or obligation under
19 which a health care provider must notify the minor's
20 parent or legal guardian of the test results, nor shall a
21 duty or obligation be implied. No civil liability or
22 criminal sanction under this Act shall be imposed for any
23 notification or non-notification of a minor's test result
24 by a health care provider acting in good faith under this
25 paragraph. For the purpose of any proceeding, civil or
26 criminal, the good faith of any health care provider
27 acting under this paragraph shall be presumed.
28 (7) All information and records held by a State
29 agency or local health authority pertaining to genetic
30 information shall be strictly confidential and exempt
31 from copying and inspection under the Freedom of
32 Information Act. The information and records shall not
33 be released or made public by the State agency or local
34 health authority and shall not be admissible as evidence
HB0008 Engrossed -7- LRB9000863JSgc
1 nor discoverable in any action of any kind in any court
2 or before any tribunal, board, agency, or person and
3 shall be treated in the same manner as the information
4 and those records subject to the provisions of Part 21 of
5 Article VIII of the Code of Civil Procedure except under
6 the following circumstances:
7 (A) when made with the written consent of all
8 persons to whom the information pertains;
9 (B) when authorized by Section 5-4-3 of the
10 Unified Code of Corrections;
11 (C) when made for the sole purpose of
12 implementing the Phenylketonuria Testing Act and
13 rules; or
14 (D) when made under the authorization of the
15 Illinois Parentage Act of 1984.
16 Disclosure shall be limited to those who have a need to
17 know the information, and no additional disclosures may be
18 made.
19 (b) Disclosure by an insurer in accordance with the
20 requirements of the Article XL of the Illinois Insurance Code
21 shall be deemed compliance with this Section.
22 Section 35. Disclosure by person to whom results have
23 been disclosed. No person to whom the results of a test have
24 been disclosed may disclose the test results to another
25 person except as authorized by Section 30.
26 Section 40. Right of action.
27 (a) Any person aggrieved by a violation of this Act
28 shall have a right of action in the circuit court and may
29 recover for each violation:
30 (1) Against any person who negligently violates a
31 provision of this Act, liquidated damages of $1,000 or
32 actual damages, whichever is greater.
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1 (2) Against any person who intentionally or
2 recklessly violates a provision of this Act, liquidated
3 damages of $5,000 or actual damages, whichever is
4 greater.
5 (3) Reasonable attorney fees.
6 (4) Such other relief, including an injunction, as
7 the court may deem appropriate.
8 (b) Article XL of the Illinois Insurance Code shall
9 provide the exclusive remedy for violations of Section 30 by
10 insurers.
11 Section 45. Damages or other relief. Nothing in this
12 Act limits the right of the subject of a test to recover
13 damages or other relief under any other applicable law.
14 Section 91. The Illinois Insurance Code is amended by
15 adding Section 356t as follows:
16 (215 ILCS 5/356t new)
17 Sec. 356t. Use of information derived from genetic
18 testing. After the effective date of this amendatory Act of
19 1997, an insurer must comply with the provisions of the
20 Genetic Information Privacy Act in connection with the
21 amendment, delivery, issuance, or renewal of, or claims for
22 or denial of coverage under, an individual or group policy of
23 accident and health insurance.
24 Section 93. The Health Maintenance Organization Act is
25 amended by changing Section 5-3 as follows:
26 (215 ILCS 125/5-3) (from Ch. 111 1/2, par. 1411.2)
27 Sec. 5-3. Insurance Code provisions.
28 (a) Health Maintenance Organizations shall be subject to
29 the provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
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1 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
2 154.6, 154.7, 154.8, 155.04, 355.2, 356m, 356t, 367i, 401,
3 401.1, 402, 403, 403A, 408, 408.2, and 412, paragraph (c) of
4 subsection (2) of Section 367, and Articles VIII 1/2, XII,
5 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
6 Code.
7 (b) For purposes of the Illinois Insurance Code, except
8 for Articles XIII and XIII 1/2, Health Maintenance
9 Organizations in the following categories are deemed to be
10 "domestic companies":
11 (1) a corporation authorized under the Medical
12 Service Plan Act, the Dental Service Plan Act, the Vision
13 Service Plan Act, the Pharmaceutical Service Plan Act,
14 the Voluntary Health Services Plan Act, or the Nonprofit
15 Health Care Service Plan Act;
16 (2) a corporation organized under the laws of this
17 State; or
18 (3) a corporation organized under the laws of
19 another state, 30% or more of the enrollees of which are
20 residents of this State, except a corporation subject to
21 substantially the same requirements in its state of
22 organization as is a "domestic company" under Article
23 VIII 1/2 of the Illinois Insurance Code.
24 (c) In considering the merger, consolidation, or other
25 acquisition of control of a Health Maintenance Organization
26 pursuant to Article VIII 1/2 of the Illinois Insurance Code,
27 (1) the Director shall give primary consideration
28 to the continuation of benefits to enrollees and the
29 financial conditions of the acquired Health Maintenance
30 Organization after the merger, consolidation, or other
31 acquisition of control takes effect;
32 (2)(i) the criteria specified in subsection (1)(b)
33 of Section 131.8 of the Illinois Insurance Code shall not
34 apply and (ii) the Director, in making his determination
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1 with respect to the merger, consolidation, or other
2 acquisition of control, need not take into account the
3 effect on competition of the merger, consolidation, or
4 other acquisition of control;
5 (3) the Director shall have the power to require
6 the following information:
7 (A) certification by an independent actuary of
8 the adequacy of the reserves of the Health
9 Maintenance Organization sought to be acquired;
10 (B) pro forma financial statements reflecting
11 the combined balance sheets of the acquiring company
12 and the Health Maintenance Organization sought to be
13 acquired as of the end of the preceding year and as
14 of a date 90 days prior to the acquisition, as well
15 as pro forma financial statements reflecting
16 projected combined operation for a period of 2
17 years;
18 (C) a pro forma business plan detailing an
19 acquiring party's plans with respect to the
20 operation of the Health Maintenance Organization
21 sought to be acquired for a period of not less than
22 3 years; and
23 (D) such other information as the Director
24 shall require.
25 (d) The provisions of Article VIII 1/2 of the Illinois
26 Insurance Code and this Section 5-3 shall apply to the sale
27 by any health maintenance organization of greater than 10% of
28 its enrollee population (including without limitation the
29 health maintenance organization's right, title, and interest
30 in and to its health care certificates).
31 (e) In considering any management contract or service
32 agreement subject to Section 141.1 of the Illinois Insurance
33 Code, the Director (i) shall, in addition to the criteria
34 specified in Section 141.2 of the Illinois Insurance Code,
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1 take into account the effect of the management contract or
2 service agreement on the continuation of benefits to
3 enrollees and the financial condition of the health
4 maintenance organization to be managed or serviced, and (ii)
5 need not take into account the effect of the management
6 contract or service agreement on competition.
7 (f) Except for small employer groups as defined in the
8 Small Employer Rating, Renewability and Portability Health
9 Insurance Act and except for medicare supplement policies as
10 defined in Section 363 of the Illinois Insurance Code, a
11 Health Maintenance Organization may by contract agree with a
12 group or other enrollment unit to effect refunds or charge
13 additional premiums under the following terms and conditions:
14 (i) the amount of, and other terms and conditions
15 with respect to, the refund or additional premium are set
16 forth in the group or enrollment unit contract agreed in
17 advance of the period for which a refund is to be paid or
18 additional premium is to be charged (which period shall
19 not be less than one year); and
20 (ii) the amount of the refund or additional premium
21 shall not exceed 20% of the Health Maintenance
22 Organization's profitable or unprofitable experience with
23 respect to the group or other enrollment unit for the
24 period (and, for purposes of a refund or additional
25 premium, the profitable or unprofitable experience shall
26 be calculated taking into account a pro rata share of the
27 Health Maintenance Organization's administrative and
28 marketing expenses, but shall not include any refund to
29 be made or additional premium to be paid pursuant to this
30 subsection (f)). The Health Maintenance Organization and
31 the group or enrollment unit may agree that the
32 profitable or unprofitable experience may be calculated
33 taking into account the refund period and the immediately
34 preceding 2 plan years.
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1 The Health Maintenance Organization shall include a
2 statement in the evidence of coverage issued to each enrollee
3 describing the possibility of a refund or additional premium,
4 and upon request of any group or enrollment unit, provide to
5 the group or enrollment unit a description of the method used
6 to calculate (1) the Health Maintenance Organization's
7 profitable experience with respect to the group or enrollment
8 unit and the resulting refund to the group or enrollment unit
9 or (2) the Health Maintenance Organization's unprofitable
10 experience with respect to the group or enrollment unit and
11 the resulting additional premium to be paid by the group or
12 enrollment unit.
13 In no event shall the Illinois Health Maintenance
14 Organization Guaranty Association be liable to pay any
15 contractual obligation of an insolvent organization to pay
16 any refund authorized under this Section.
17 (Source: P.A. 88-313; 89-90, eff. 6-30-95.)
18 Section 95. The Limited Health Service Organization Act
19 is amended by changing Section 4003 as follows:
20 (215 ILCS 130/4003) (from Ch. 73, par. 1504-3)
21 Sec. 4003. Illinois Insurance Code provisions. Limited
22 health service organizations shall be subject to the
23 provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
24 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
25 154.6, 154.7, 154.8, 155.04, 355.2, 356t, 401, 401.1, 402,
26 403, 403A, 408, 408.2, and 412, and Articles VIII 1/2, XII,
27 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
28 Code. For purposes of the Illinois Insurance Code, except
29 for Articles XIII and XIII 1/2, limited health service
30 organizations in the following categories are deemed to be
31 domestic companies:
32 (1) a corporation under the laws of this State; or
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1 (2) a corporation organized under the laws of
2 another state, 30% of more of the enrollees of which are
3 residents of this State, except a corporation subject to
4 substantially the same requirements in its state of
5 organization as is a domestic company under Article VIII
6 1/2 of the Illinois Insurance Code.
7 (Source: P.A. 86-600; 87-587; 87-1090.)
8 Section 97. The Voluntary Health Services Plans Act is
9 amended by changing Section 10 as follows:
10 (215 ILCS 165/10) (from Ch. 32, par. 604)
11 Sec. 10. Application of Insurance Code provisions.
12 Health services plan corporations and all persons interested
13 therein or dealing therewith shall be subject to the
14 provisions of Article XII 1/2 and Sections 3.1, 133, 140,
15 143, 143c, 149, 354, 355.2, 356r, 356t, 367.2, 401, 401.1,
16 402, 403, 403A, 408, 408.2, and 412, and paragraphs (7) and
17 (15) of Section 367 of the Illinois Insurance Code.
18 (Source: P.A. 89-514, eff. 7-17-96.)