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90_HB0008ham001
LRB9000863JSgcam01
1 AMENDMENT TO HOUSE BILL 8
2 AMENDMENT NO. . Amend House Bill 8 by replacing
3 everything after the enacting clause with the following:
4 "Section 1. Short title. This Act may be cited as the
5 Genetic Information Privacy Act.
6 Section 5. Legislative findings; intent. The General
7 Assembly finds that:
8 (1) The use of genetic testing can be valuable to
9 an individual.
10 (2) Despite existing laws, regulations, and
11 professional standards which require or promote voluntary
12 and confidential use of genetic testing information, many
13 members of the public are deterred from seeking genetic
14 testing because of fear that test results will be
15 disclosed without consent or be used in a discriminatory
16 manner.
17 (3) The public health will be served by
18 facilitating voluntary and confidential nondiscriminatory
19 use of genetic testing information.
20 Section 10. Definitions. As used in this Act:
21 "Genetic testing" means a test of a person's genes, gene
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1 products, or chromosomes for abnormalities or deficiencies,
2 including carrier status, that (i) are linked to physical or
3 mental disorders or impairments, (ii) indicate a
4 susceptibility to illness, disease, impairment, or other
5 disorders, whether physical or mental, or (iii) demonstrate
6 genetic or chromosomal damage due to environmental factors.
7 "Insurer" means (i) an entity that transacts an insurance
8 business and (ii) a managed care plan.
9 "Managed care plan" means a plan that establishes,
10 operates, or maintains a network of health care providers
11 that have entered into agreements with the plan to provide
12 health care services to enrollees where the plan has the
13 ultimate and direct contractual obligation to the enrollee to
14 arrange for the provision of or pay for services through:
15 (1) organizational arrangements for ongoing quality
16 assurance, utilization review programs, or dispute
17 resolution; or
18 (2) financial incentives for persons enrolled in
19 the plan to use the participating providers and
20 procedures covered by the plan.
21 A managed care plan may be established or operated by any
22 entity including a licensed insurance company, hospital or
23 medical service plan, health maintenance organization,
24 limited health service organization, preferred provider
25 organization, third party administrator, or an employer or
26 employee organization.
27 Section 15. Confidentiality of genetic information.
28 (a) Except as otherwise provided in this Act, genetic
29 testing and information derived from genetic testing is
30 confidential and privileged and may be released only to the
31 individual tested and to persons specifically authorized, in
32 writing in accordance with Section 30, by that individual to
33 receive the information. Except as otherwise provided in
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1 subsection (b) and in Section 30, this information shall not
2 be admissible as evidence, nor discoverable in any action of
3 any kind in any court, or before any tribunal, board, agency,
4 or person pursuant to Part 21 of Article VIII of the Code of
5 Civil Procedure. No liability shall attach to any hospital,
6 physician, or other health care provider for compliance with
7 the provisions of this Act including a specific written
8 release by the individual in accordance with this Act.
9 (b) When a biological sample is legally obtained by a
10 peace officer for use in a criminal investigation or
11 prosecution, information derived from genetic testing of that
12 sample may be disclosed to appropriate law enforcement
13 authorities conducting the investigation or prosecution and
14 may be used in accordance with Section 5-4-3 of the Unified
15 Code of Corrections. The information may be used during the
16 course of the investigation or prosecution with respect to
17 the individual tested without the consent of the individual
18 and shall be admissible as evidence in court.
19 The information shall be confidential and disclosed to
20 only those individuals involved in the investigation or
21 prosecution with a need to know the information.
22 (c) If the subject of the information requested by law
23 enforcement is found innocent of the offense or otherwise not
24 criminally penalized, then the records shall be expunged by
25 the court within 30 days after the final legal proceeding.
26 The court shall notify the subject of the information of the
27 expungement of the records in writing.
28 Law enforcement personnel and court personnel shall not
29 publicly disclose the existence or results of any genetic
30 testing information.
31 Section 20. Use of genetic testing information by
32 insurers.
33 (a) An insurer may not seek information derived from
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1 genetic testing for use in connection with a policy of
2 accident and health insurance. Except as provided in
3 subsection (b), an insurer that receives information derived
4 from genetic testing may not use the information for a
5 nontherapeutic purpose as it relates to a policy of accident
6 and health insurance.
7 (b) An insurer may consider the results of genetic
8 testing in connection with a policy of accident and health
9 insurance if the individual voluntarily submits the results
10 and the results are favorable to the individual.
11 (c) An insurer that possesses information derived from
12 genetic testing may not release the information to a third
13 party, except as specified in Section 30.
14 Section 25. Use of genetic testing information by
15 employers.
16 (a) An employer may not fail to hire, refuse to hire,
17 discharge, or otherwise discriminate against an individual
18 with respect to compensation or the terms, conditions, or
19 privileges of employment because of the results of, or the
20 refusal of the individual to submit to, genetic testing.
21 (b) This Section does not prohibit the genetic testing
22 of an employee who requests to undergo genetic testing and
23 who provides written and informed consent to genetic testing
24 to determine the employee's susceptibility or level of
25 exposure to potentially toxic chemicals or potentially toxic
26 substances in the workplace, if the employer does not
27 terminate the employee or take any other action that
28 adversely affects any term, condition, or privilege of the
29 employee's employment as a result of genetic testing.
30 (c) An employer may release genetic testing information
31 only in accordance with Section 30.
32 Section 30. Disclosure of person tested and test
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1 results.
2 No person may disclose or be compelled to disclose the
3 identity of any person upon whom a genetic test is performed
4 or the results of a genetic test in a manner that permits
5 identification of the subject of the test, except to the
6 following persons:
7 (1) The subject of the test or the subject's legally
8 authorized representative. This paragraph does not create a
9 duty or obligation under which a health care provider must
10 notify the subject's spouse or legal guardian of the test
11 results, and no such duty or obligation shall be implied. No
12 civil liability or criminal sanction under this Act shall be
13 imposed for any disclosure or nondisclosure of a test result
14 to a spouse by a physician acting in good faith under this
15 paragraph. For the purpose of any proceedings, civil or
16 criminal, the good faith of any physician acting under this
17 paragraph shall be presumed.
18 (2) Any person designated in a specific written legally
19 effective release of the test results executed by the subject
20 of the test or the subject's legally authorized
21 representative.
22 (3) An authorized agent or employee of a health facility
23 or health care provider if the health facility or health care
24 provider itself is authorized to obtain the test results, the
25 agent or employee provides patient care, and the agent or
26 employee has a need to know the information.
27 (4) A health facility or health care provider that
28 procures, processes, distributes, or uses:
29 (A) a human body part from a deceased person with
30 respect to medical information regarding that person; or
31 (B) semen provided prior to the effective date of
32 this Act for the purpose of artificial insemination.
33 (5) Health facility staff committees for the purposes of
34 conducting program monitoring, program evaluation, or service
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1 reviews.
2 (6) In the case of a minor under 18 years of age, the
3 health care provider who ordered the test shall make a
4 reasonable effort to notify the minor's parent or legal
5 guardian if, in the professional judgment of the health care
6 provider, notification would be in the best interest of the
7 minor and the health care provider has first sought
8 unsuccessfully to persuade the minor to notify the parent or
9 legal guardian or after a reasonable time after the minor has
10 agreed to notify the parent or legal guardian, the health
11 care provider has reason to believe that the minor has not
12 made the notification. This paragraph shall not create a
13 duty or obligation under which a health care provider must
14 notify the minor's parent or legal guardian of the test
15 results, nor shall a duty or obligation be implied. No civil
16 liability or criminal sanction under this Act shall be
17 imposed for any notification or non-notification of a minor's
18 test result by a health care provider acting in good faith
19 under this paragraph. For the purpose of any proceeding,
20 civil or criminal, the good faith of any health care provider
21 acting under this paragraph shall be presumed.
22 (7) All information and records held by a State agency
23 or local health authority pertaining to genetic information
24 shall be strictly confidential and exempt from copying and
25 inspection under the Freedom of Information Act. The
26 information and records shall not be released or made public
27 by the State agency or local health authority and shall not
28 be admissible as evidence nor discoverable in any action of
29 any kind in any court or before any tribunal, board, agency,
30 or person and shall be treated in the same manner as the
31 information and those records subject to the provisions of
32 Part 21 of Article VIII of the Code of Civil Procedure except
33 under the following circumstances:
34 (A) when made with the written consent of all
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1 persons to whom the information pertains;
2 (B) when authorized by Section 5-4-3 of the Unified
3 Code of Corrections;
4 (C) when made for the sole purpose of implementing
5 the Phenylketonuria Testing Act and rules; or
6 (D) when made under the authorization of the
7 Illinois Parentage Act of 1984.
8 Disclosure shall be limited to those who have a need to
9 know the information, and no additional disclosures may be
10 made.
11 Section 35. Disclosure by person to whom results have
12 been disclosed. No person to whom the results of a test have
13 been disclosed may disclose the test results to another
14 person except as authorized by Section 30.
15 Section 40. Right of action. Any person aggrieved by a
16 violation of this Act shall have a right of action in the
17 circuit court and may recover for each violation:
18 (1) Against any person who negligently violates a
19 provision of this Act, liquidated damages of $1,000 or actual
20 damages, whichever is greater.
21 (2) Against any person who intentionally or recklessly
22 violates a provision of this Act, liquidated damages of
23 $5,000 or actual damages, whichever is greater.
24 (3) Reasonable attorney fees.
25 (4) Such other relief, including an injunction, as the
26 court may deem appropriate.
27 Section 45. Damages or other relief. Nothing in this
28 Act limits the right of the subject of a test to recover
29 damages or other relief under any other applicable law.
30 Section 91. The Illinois Insurance Code is amended by
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1 adding Section 356t as follows:
2 (215 ILCS 5/356t new)
3 Sec. 356t. Use of information derived from genetic
4 testing. After the effective date of this amendatory Act of
5 1997, an insurer must comply with the provisions of the
6 Genetic Information Privacy Act in connection with the
7 amendment, delivery, issuance, or renewal of, or claims for
8 or denial of coverage under, an individual or group policy of
9 accident and health insurance.
10 Section 93. The Health Maintenance Organization Act is
11 amended by changing Section 5-3 as follows:
12 (215 ILCS 125/5-3) (from Ch. 111 1/2, par. 1411.2)
13 Sec. 5-3. Insurance Code provisions.
14 (a) Health Maintenance Organizations shall be subject to
15 the provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
16 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
17 154.6, 154.7, 154.8, 155.04, 355.2, 356m, 356t, 367i, 401,
18 401.1, 402, 403, 403A, 408, 408.2, and 412, paragraph (c) of
19 subsection (2) of Section 367, and Articles VIII 1/2, XII,
20 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
21 Code.
22 (b) For purposes of the Illinois Insurance Code, except
23 for Articles XIII and XIII 1/2, Health Maintenance
24 Organizations in the following categories are deemed to be
25 "domestic companies":
26 (1) a corporation authorized under the Medical
27 Service Plan Act, the Dental Service Plan Act, the Vision
28 Service Plan Act, the Pharmaceutical Service Plan Act,
29 the Voluntary Health Services Plan Act, or the Nonprofit
30 Health Care Service Plan Act;
31 (2) a corporation organized under the laws of this
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1 State; or
2 (3) a corporation organized under the laws of
3 another state, 30% or more of the enrollees of which are
4 residents of this State, except a corporation subject to
5 substantially the same requirements in its state of
6 organization as is a "domestic company" under Article
7 VIII 1/2 of the Illinois Insurance Code.
8 (c) In considering the merger, consolidation, or other
9 acquisition of control of a Health Maintenance Organization
10 pursuant to Article VIII 1/2 of the Illinois Insurance Code,
11 (1) the Director shall give primary consideration
12 to the continuation of benefits to enrollees and the
13 financial conditions of the acquired Health Maintenance
14 Organization after the merger, consolidation, or other
15 acquisition of control takes effect;
16 (2)(i) the criteria specified in subsection (1)(b)
17 of Section 131.8 of the Illinois Insurance Code shall not
18 apply and (ii) the Director, in making his determination
19 with respect to the merger, consolidation, or other
20 acquisition of control, need not take into account the
21 effect on competition of the merger, consolidation, or
22 other acquisition of control;
23 (3) the Director shall have the power to require
24 the following information:
25 (A) certification by an independent actuary of
26 the adequacy of the reserves of the Health
27 Maintenance Organization sought to be acquired;
28 (B) pro forma financial statements reflecting
29 the combined balance sheets of the acquiring company
30 and the Health Maintenance Organization sought to be
31 acquired as of the end of the preceding year and as
32 of a date 90 days prior to the acquisition, as well
33 as pro forma financial statements reflecting
34 projected combined operation for a period of 2
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1 years;
2 (C) a pro forma business plan detailing an
3 acquiring party's plans with respect to the
4 operation of the Health Maintenance Organization
5 sought to be acquired for a period of not less than
6 3 years; and
7 (D) such other information as the Director
8 shall require.
9 (d) The provisions of Article VIII 1/2 of the Illinois
10 Insurance Code and this Section 5-3 shall apply to the sale
11 by any health maintenance organization of greater than 10% of
12 its enrollee population (including without limitation the
13 health maintenance organization's right, title, and interest
14 in and to its health care certificates).
15 (e) In considering any management contract or service
16 agreement subject to Section 141.1 of the Illinois Insurance
17 Code, the Director (i) shall, in addition to the criteria
18 specified in Section 141.2 of the Illinois Insurance Code,
19 take into account the effect of the management contract or
20 service agreement on the continuation of benefits to
21 enrollees and the financial condition of the health
22 maintenance organization to be managed or serviced, and (ii)
23 need not take into account the effect of the management
24 contract or service agreement on competition.
25 (f) Except for small employer groups as defined in the
26 Small Employer Rating, Renewability and Portability Health
27 Insurance Act and except for medicare supplement policies as
28 defined in Section 363 of the Illinois Insurance Code, a
29 Health Maintenance Organization may by contract agree with a
30 group or other enrollment unit to effect refunds or charge
31 additional premiums under the following terms and conditions:
32 (i) the amount of, and other terms and conditions
33 with respect to, the refund or additional premium are set
34 forth in the group or enrollment unit contract agreed in
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1 advance of the period for which a refund is to be paid or
2 additional premium is to be charged (which period shall
3 not be less than one year); and
4 (ii) the amount of the refund or additional premium
5 shall not exceed 20% of the Health Maintenance
6 Organization's profitable or unprofitable experience with
7 respect to the group or other enrollment unit for the
8 period (and, for purposes of a refund or additional
9 premium, the profitable or unprofitable experience shall
10 be calculated taking into account a pro rata share of the
11 Health Maintenance Organization's administrative and
12 marketing expenses, but shall not include any refund to
13 be made or additional premium to be paid pursuant to this
14 subsection (f)). The Health Maintenance Organization and
15 the group or enrollment unit may agree that the
16 profitable or unprofitable experience may be calculated
17 taking into account the refund period and the immediately
18 preceding 2 plan years.
19 The Health Maintenance Organization shall include a
20 statement in the evidence of coverage issued to each enrollee
21 describing the possibility of a refund or additional premium,
22 and upon request of any group or enrollment unit, provide to
23 the group or enrollment unit a description of the method used
24 to calculate (1) the Health Maintenance Organization's
25 profitable experience with respect to the group or enrollment
26 unit and the resulting refund to the group or enrollment unit
27 or (2) the Health Maintenance Organization's unprofitable
28 experience with respect to the group or enrollment unit and
29 the resulting additional premium to be paid by the group or
30 enrollment unit.
31 In no event shall the Illinois Health Maintenance
32 Organization Guaranty Association be liable to pay any
33 contractual obligation of an insolvent organization to pay
34 any refund authorized under this Section.
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1 (Source: P.A. 88-313; 89-90, eff. 6-30-95.)
2 Section 95. The Limited Health Service Organization Act
3 is amended by changing Section 4003 as follows:
4 (215 ILCS 130/4003) (from Ch. 73, par. 1504-3)
5 Sec. 4003. Illinois Insurance Code provisions. Limited
6 health service organizations shall be subject to the
7 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, 356t, 401, 401.1, 402,
10 403, 403A, 408, 408.2, and 412, and Articles VIII 1/2, XII,
11 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
12 Code. For purposes of the Illinois Insurance Code, except
13 for Articles XIII and XIII 1/2, limited health service
14 organizations in the following categories are deemed to be
15 domestic companies:
16 (1) a corporation under the laws of this State; or
17 (2) a corporation organized under the laws of
18 another state, 30% of more of the enrollees of which are
19 residents of this State, except a corporation subject to
20 substantially the same requirements in its state of
21 organization as is a domestic company under Article VIII
22 1/2 of the Illinois Insurance Code.
23 (Source: P.A. 86-600; 87-587; 87-1090.)
24 Section 97. The Voluntary Health Services Plans Act is
25 amended by changing Section 10 as follows:
26 (215 ILCS 165/10) (from Ch. 32, par. 604)
27 Sec. 10. Application of Insurance Code provisions.
28 Health services plan corporations and all persons interested
29 therein or dealing therewith shall be subject to the
30 provisions of Article XII 1/2 and Sections 3.1, 133, 140,
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1 143, 143c, 149, 354, 355.2, 356r, 356t, 367.2, 401, 401.1,
2 402, 403, 403A, 408, 408.2, and 412, and paragraphs (7) and
3 (15) of Section 367 of the Illinois Insurance Code.
4 (Source: P.A. 89-514, eff. 7-17-96.)".