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90_HB0008ham003
LRB9000863JSgcam07
1 AMENDMENT TO HOUSE BILL 8
2 AMENDMENT NO. . Amend House Bill 8, AS AMENDED, by
3 replacing everything after the enacting clause with the
4 following:
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:
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1 "Genetic testing" means a test of a person's genes, gene
2 products, or chromosomes for abnormalities or deficiencies,
3 including carrier status, that (i) are linked to physical or
4 mental disorders or impairments, (ii) indicate a
5 susceptibility to illness, disease, impairment, or other
6 disorders, whether physical or mental, or (iii) demonstrate
7 genetic or chromosomal damage due to environmental factors.
8 Genetic testing does not include routine physical
9 measurements; chemical, blood and urine analyses that are
10 widely accepted and in use in clinical practice; tests for
11 use of drugs; and tests for the presence of the human
12 immunodeficiency virus.
13 "Insurer" means (i) an entity that transacts an insurance
14 business and (ii) a managed care plan.
15 "Managed care plan" means a plan that establishes,
16 operates, or maintains a network of health care providers
17 that have entered into agreements with the plan to provide
18 health care services to enrollees where the plan has the
19 ultimate and direct contractual obligation to the enrollee to
20 arrange for the provision of or pay for services through:
21 (1) organizational arrangements for ongoing quality
22 assurance, utilization review programs, or dispute
23 resolution; or
24 (2) financial incentives for persons enrolled in
25 the plan to use the participating providers and
26 procedures covered by the plan.
27 A managed care plan may be established or operated by any
28 entity including a licensed insurance company, hospital or
29 medical service plan, health maintenance organization,
30 limited health service organization, preferred provider
31 organization, third party administrator, or an employer or
32 employee organization.
33 Section 15. Confidentiality of genetic information.
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1 (a) Except as otherwise provided in this Act, genetic
2 testing and information derived from genetic testing is
3 confidential and privileged and may be released only to the
4 individual tested and to persons specifically authorized, in
5 writing in accordance with Section 30, by that individual to
6 receive the information. Except as otherwise provided in
7 subsection (b) and in Section 30, this information shall not
8 be admissible as evidence, nor discoverable in any action of
9 any kind in any court, or before any tribunal, board, agency,
10 or person pursuant to Part 21 of Article VIII of the Code of
11 Civil Procedure. No liability shall attach to any hospital,
12 physician, or other health care provider for compliance with
13 the provisions of this Act including a specific written
14 release by the individual in accordance with this Act.
15 (b) When a biological sample is legally obtained by a
16 peace officer for use in a criminal investigation or
17 prosecution, information derived from genetic testing of that
18 sample may be disclosed for identification purposes to
19 appropriate law enforcement authorities conducting the
20 investigation or prosecution and may be used in accordance
21 with Section 5-4-3 of the Unified Code of Corrections. The
22 information may be used for identification purposes during
23 the course of the investigation or prosecution with respect
24 to the individual tested without the consent of the
25 individual and shall be admissible as evidence in court.
26 The information shall be confidential and may be
27 disclosed only for purposes of criminal investigation or
28 prosecution.
29 (c) If the subject of the information requested by law
30 enforcement is found innocent of the offense or otherwise not
31 criminally penalized, then the court records shall be
32 expunged by the court within 30 days after the final legal
33 proceeding. The court shall notify the subject of the
34 information of the expungement of the records in writing.
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1 (d) Results of genetic testing that indicate that the
2 individual tested is at the time of the test afflicted with a
3 disease, whether or not currently symptomatic, are not
4 subject to the confidentiality requirements of this Act.
5 Section 20. Use of genetic testing information for
6 insurance purposes.
7 (a) An insurer may not seek information derived from
8 genetic testing for use in connection with a policy of
9 accident and health insurance. Except as provided in
10 subsection (b), an insurer that receives information derived
11 from genetic testing may not use the information for a
12 nontherapeutic purpose as it relates to a policy of accident
13 and health insurance.
14 (b) An insurer may consider the results of genetic
15 testing in connection with a policy of accident and health
16 insurance if the individual voluntarily submits the results
17 and the results are favorable to the individual.
18 (c) An insurer that possesses information derived from
19 genetic testing may not release the information to a third
20 party, except as specified in Section 30.
21 Section 22. Tests to determine inherited characteristics
22 in paternity proceedings. Nothing in this Act shall be
23 construed to affect or restrict in any way the ordering of or
24 use of results from deoxyribonucleic acid (DNA) testing or
25 other tests to determine inherited characteristics by the
26 court in a judicial proceeding under the Illinois Parentage
27 Act of 1984 or by the Illinois Department of Public Aid in an
28 administrative paternity proceeding under Article X of the
29 Illinois Public Aid Code and rules promulgated under that
30 Article.
31 Section 25. Use of genetic testing information by
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1 employers.
2 (a) An employer shall treat genetic testing information
3 in such a manner that is consistent with the requirements of
4 federal law, including but not limited to the Americans with
5 Disabilities Act.
6 (b) An employer may release genetic testing information
7 only in accordance with Section 30.
8 Section 30. Disclosure of person tested and test
9 results.
10 (a) No person may disclose or be compelled to disclose
11 the identity of any person upon whom a genetic test is
12 performed or the results of a genetic test in a manner that
13 permits identification of the subject of the test, except to
14 the following persons:
15 (1) The subject of the test or the subject's
16 legally authorized representative. This paragraph does
17 not create a duty or obligation under which a health care
18 provider must notify the subject's spouse or legal
19 guardian of the test results, and no such duty or
20 obligation shall be implied. No civil liability or
21 criminal sanction under this Act shall be imposed for any
22 disclosure or nondisclosure of a test result to a spouse
23 by a physician acting in good faith under this paragraph.
24 For the purpose of any proceedings, civil or criminal,
25 the good faith of any physician acting under this
26 paragraph shall be presumed.
27 (2) Any person designated in a specific written
28 legally effective release of the test results executed by
29 the subject of the test or the subject's legally
30 authorized representative.
31 (3) An authorized agent or employee of a health
32 facility or health care provider if the health facility
33 or health care provider itself is authorized to obtain
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1 the test results, the agent or employee provides patient
2 care, and the agent or employee has a need to know the
3 information in order to conduct the tests or provide care
4 or treatment.
5 (4) A health facility or health care provider that
6 procures, processes, distributes, or uses:
7 (A) a human body part from a deceased person
8 with respect to medical information regarding that
9 person; or
10 (B) semen provided prior to the effective date
11 of this Act for the purpose of artificial
12 insemination.
13 (5) Health facility staff committees for the
14 purposes of conducting program monitoring, program
15 evaluation, or service reviews.
16 (6) In the case of a minor under 18 years of age,
17 the health care provider who ordered the test shall make
18 a reasonable effort to notify the minor's parent or legal
19 guardian if, in the professional judgment of the health
20 care provider, notification would be in the best interest
21 of the minor and the health care provider has first
22 sought unsuccessfully to persuade the minor to notify the
23 parent or legal guardian or after a reasonable time after
24 the minor has agreed to notify the parent or legal
25 guardian, the health care provider has reason to believe
26 that the minor has not made the notification. This
27 paragraph shall not create a duty or obligation under
28 which a health care provider must notify the minor's
29 parent or legal guardian of the test results, nor shall a
30 duty or obligation be implied. No civil liability or
31 criminal sanction under this Act shall be imposed for any
32 notification or non-notification of a minor's test result
33 by a health care provider acting in good faith under this
34 paragraph. For the purpose of any proceeding, civil or
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1 criminal, the good faith of any health care provider
2 acting under this paragraph shall be presumed.
3 (7) All information and records held by a State
4 agency or local health authority pertaining to genetic
5 information shall be strictly confidential and exempt
6 from copying and inspection under the Freedom of
7 Information Act. The information and records shall not
8 be released or made public by the State agency or local
9 health authority and shall not be admissible as evidence
10 nor discoverable in any action of any kind in any court
11 or before any tribunal, board, agency, or person and
12 shall be treated in the same manner as the information
13 and those records subject to the provisions of Part 21 of
14 Article VIII of the Code of Civil Procedure except under
15 the following circumstances:
16 (A) when made with the written consent of all
17 persons to whom the information pertains;
18 (B) when authorized by Section 5-4-3 of the
19 Unified Code of Corrections;
20 (C) when made for the sole purpose of
21 implementing the Phenylketonuria Testing Act and
22 rules; or
23 (D) when made under the authorization of the
24 Illinois Parentage Act of 1984.
25 Disclosure shall be limited to those who have a need to
26 know the information, and no additional disclosures may be
27 made.
28 (b) Disclosure by an insurer in accordance with the
29 requirements of the Article XL of the Illinois Insurance Code
30 shall be deemed compliance with this Section.
31 Section 35. Disclosure by person to whom results have
32 been disclosed. No person to whom the results of a test have
33 been disclosed may disclose the test results to another
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1 person except as authorized by Section 30.
2 Section 40. Right of action.
3 (a) Any person aggrieved by a violation of this Act
4 shall have a right of action in the circuit court and may
5 recover for each violation:
6 (1) Against any person who negligently violates a
7 provision of this Act, liquidated damages of $1,000 or
8 actual damages, whichever is greater.
9 (2) Against any person who intentionally or
10 recklessly violates a provision of this Act, liquidated
11 damages of $5,000 or actual damages, whichever is
12 greater.
13 (3) Reasonable attorney fees.
14 (4) Such other relief, including an injunction, as
15 the court may deem appropriate.
16 (b) Article XL of the Illinois Insurance Code shall
17 provide the exclusive remedy for violations of Section 30 by
18 insurers.
19 Section 45. Damages or other relief. Nothing in this
20 Act limits the right of the subject of a test to recover
21 damages or other relief under any other applicable law.
22 Section 91. The Illinois Insurance Code is amended by
23 adding Section 356t as follows:
24 (215 ILCS 5/356t new)
25 Sec. 356t. Use of information derived from genetic
26 testing. After the effective date of this amendatory Act of
27 1997, an insurer must comply with the provisions of the
28 Genetic Information Privacy Act in connection with the
29 amendment, delivery, issuance, or renewal of, or claims for
30 or denial of coverage under, an individual or group policy of
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1 accident and health insurance.
2 Section 93. The Health Maintenance Organization Act is
3 amended by changing Section 5-3 as follows:
4 (215 ILCS 125/5-3) (from Ch. 111 1/2, par. 1411.2)
5 Sec. 5-3. Insurance Code provisions.
6 (a) Health Maintenance Organizations shall be subject to
7 the provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
8 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
9 154.6, 154.7, 154.8, 155.04, 355.2, 356m, 356t, 367i, 401,
10 401.1, 402, 403, 403A, 408, 408.2, and 412, paragraph (c) of
11 subsection (2) of Section 367, and Articles VIII 1/2, XII,
12 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
13 Code.
14 (b) For purposes of the Illinois Insurance Code, except
15 for Articles XIII and XIII 1/2, Health Maintenance
16 Organizations in the following categories are deemed to be
17 "domestic companies":
18 (1) a corporation authorized under the Medical
19 Service Plan Act, the Dental Service Plan Act, the Vision
20 Service Plan Act, the Pharmaceutical Service Plan Act,
21 the Voluntary Health Services Plan Act, or the Nonprofit
22 Health Care Service Plan Act;
23 (2) a corporation organized under the laws of this
24 State; or
25 (3) a corporation organized under the laws of
26 another state, 30% or more of the enrollees of which are
27 residents of this State, except a corporation subject to
28 substantially the same requirements in its state of
29 organization as is a "domestic company" under Article
30 VIII 1/2 of the Illinois Insurance Code.
31 (c) In considering the merger, consolidation, or other
32 acquisition of control of a Health Maintenance Organization
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1 pursuant to Article VIII 1/2 of the Illinois Insurance Code,
2 (1) the Director shall give primary consideration
3 to the continuation of benefits to enrollees and the
4 financial conditions of the acquired Health Maintenance
5 Organization after the merger, consolidation, or other
6 acquisition of control takes effect;
7 (2)(i) the criteria specified in subsection (1)(b)
8 of Section 131.8 of the Illinois Insurance Code shall not
9 apply and (ii) the Director, in making his determination
10 with respect to the merger, consolidation, or other
11 acquisition of control, need not take into account the
12 effect on competition of the merger, consolidation, or
13 other acquisition of control;
14 (3) the Director shall have the power to require
15 the following information:
16 (A) certification by an independent actuary of
17 the adequacy of the reserves of the Health
18 Maintenance Organization sought to be acquired;
19 (B) pro forma financial statements reflecting
20 the combined balance sheets of the acquiring company
21 and the Health Maintenance Organization sought to be
22 acquired as of the end of the preceding year and as
23 of a date 90 days prior to the acquisition, as well
24 as pro forma financial statements reflecting
25 projected combined operation for a period of 2
26 years;
27 (C) a pro forma business plan detailing an
28 acquiring party's plans with respect to the
29 operation of the Health Maintenance Organization
30 sought to be acquired for a period of not less than
31 3 years; and
32 (D) such other information as the Director
33 shall require.
34 (d) The provisions of Article VIII 1/2 of the Illinois
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1 Insurance Code and this Section 5-3 shall apply to the sale
2 by any health maintenance organization of greater than 10% of
3 its enrollee population (including without limitation the
4 health maintenance organization's right, title, and interest
5 in and to its health care certificates).
6 (e) In considering any management contract or service
7 agreement subject to Section 141.1 of the Illinois Insurance
8 Code, the Director (i) shall, in addition to the criteria
9 specified in Section 141.2 of the Illinois Insurance Code,
10 take into account the effect of the management contract or
11 service agreement on the continuation of benefits to
12 enrollees and the financial condition of the health
13 maintenance organization to be managed or serviced, and (ii)
14 need not take into account the effect of the management
15 contract or service agreement on competition.
16 (f) Except for small employer groups as defined in the
17 Small Employer Rating, Renewability and Portability Health
18 Insurance Act and except for medicare supplement policies as
19 defined in Section 363 of the Illinois Insurance Code, a
20 Health Maintenance Organization may by contract agree with a
21 group or other enrollment unit to effect refunds or charge
22 additional premiums under the following terms and conditions:
23 (i) the amount of, and other terms and conditions
24 with respect to, the refund or additional premium are set
25 forth in the group or enrollment unit contract agreed in
26 advance of the period for which a refund is to be paid or
27 additional premium is to be charged (which period shall
28 not be less than one year); and
29 (ii) the amount of the refund or additional premium
30 shall not exceed 20% of the Health Maintenance
31 Organization's profitable or unprofitable experience with
32 respect to the group or other enrollment unit for the
33 period (and, for purposes of a refund or additional
34 premium, the profitable or unprofitable experience shall
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1 be calculated taking into account a pro rata share of the
2 Health Maintenance Organization's administrative and
3 marketing expenses, but shall not include any refund to
4 be made or additional premium to be paid pursuant to this
5 subsection (f)). The Health Maintenance Organization and
6 the group or enrollment unit may agree that the
7 profitable or unprofitable experience may be calculated
8 taking into account the refund period and the immediately
9 preceding 2 plan years.
10 The Health Maintenance Organization shall include a
11 statement in the evidence of coverage issued to each enrollee
12 describing the possibility of a refund or additional premium,
13 and upon request of any group or enrollment unit, provide to
14 the group or enrollment unit a description of the method used
15 to calculate (1) the Health Maintenance Organization's
16 profitable experience with respect to the group or enrollment
17 unit and the resulting refund to the group or enrollment unit
18 or (2) the Health Maintenance Organization's unprofitable
19 experience with respect to the group or enrollment unit and
20 the resulting additional premium to be paid by the group or
21 enrollment unit.
22 In no event shall the Illinois Health Maintenance
23 Organization Guaranty Association be liable to pay any
24 contractual obligation of an insolvent organization to pay
25 any refund authorized under this Section.
26 (Source: P.A. 88-313; 89-90, eff. 6-30-95.)
27 Section 95. The Limited Health Service Organization Act
28 is amended by changing Section 4003 as follows:
29 (215 ILCS 130/4003) (from Ch. 73, par. 1504-3)
30 Sec. 4003. Illinois Insurance Code provisions. Limited
31 health service organizations shall be subject to the
32 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, 356t, 401, 401.1, 402,
3 403, 403A, 408, 408.2, and 412, and Articles VIII 1/2, XII,
4 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
5 Code. For purposes of the Illinois Insurance Code, except
6 for Articles XIII and XIII 1/2, limited health service
7 organizations in the following categories are deemed to be
8 domestic companies:
9 (1) a corporation under the laws of this State; or
10 (2) a corporation organized under the laws of
11 another state, 30% of more of the enrollees of which are
12 residents of this State, except a corporation subject to
13 substantially the same requirements in its state of
14 organization as is a domestic company under Article VIII
15 1/2 of the Illinois Insurance Code.
16 (Source: P.A. 86-600; 87-587; 87-1090.)
17 Section 97. The Voluntary Health Services Plans Act is
18 amended by changing Section 10 as follows:
19 (215 ILCS 165/10) (from Ch. 32, par. 604)
20 Sec. 10. Application of Insurance Code provisions.
21 Health services plan corporations and all persons interested
22 therein or dealing therewith shall be subject to the
23 provisions of Article XII 1/2 and Sections 3.1, 133, 140,
24 143, 143c, 149, 354, 355.2, 356r, 356t, 367.2, 401, 401.1,
25 402, 403, 403A, 408, 408.2, and 412, and paragraphs (7) and
26 (15) of Section 367 of the Illinois Insurance Code.
27 (Source: P.A. 89-514, eff. 7-17-96.)".