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| [ Introduced ] | [ Engrossed ] | [ Senate Amendment 002 ] |
90_SB0672sam001
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1 AMENDMENT TO SENATE BILL 672
2 AMENDMENT NO. . Amend Senate Bill 672 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 (d) Results of genetic testing that indicate that the
32 individual tested is at the time of the test afflicted with a
33 disease are not subject to the confidentiality requirements
34 of this Act.
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1 Section 20. Use of genetic testing information for
2 insurance purposes.
3 (a) An insurer may not seek information derived from
4 genetic testing for use in connection with a policy of
5 accident and health insurance. Except as provided in
6 subsection (b), an insurer that receives information derived
7 from genetic testing may not use the information for a
8 nontherapeutic purpose as it relates to a policy of accident
9 and health insurance.
10 (b) An insurer may consider the results of genetic
11 testing in connection with a policy of accident and health
12 insurance if the individual voluntarily submits the results
13 and the results are favorable to the individual.
14 (c) An insurer that possesses information derived from
15 genetic testing may not release the information to a third
16 party, except as specified in Section 30.
17 (d) An individual who has knowledge of the results of
18 genetic testing that indicate that the individual has a high
19 probability of being afflicted with a genetically-linked
20 fatal disease may not obtain a policy of life insurance
21 without disclosing those results to the insurer.
22 Section 22. Tests to determine inherited characteristics
23 in paternity proceedings. Nothing in this Act shall be
24 construed to affect or restrict in any way the ordering of or
25 use of results from deoxyribonucleic acid (DNA) testing or
26 other tests to determine inherited characteristics by the
27 court in a judicial proceeding under the Illinois Parentage
28 Act of 1984 or by the Illinois Department of Public Aid in an
29 administrative paternity proceeding under Article X of the
30 Illinois Public Aid Code and rules promulgated under that
31 Article.
32 Section 25. Use of genetic testing information by
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1 employers.
2 (a) An employer may not fail to hire, refuse to hire,
3 discharge, or otherwise discriminate against an individual
4 with respect to compensation or the terms, conditions, or
5 privileges of employment because of the results of, or the
6 refusal of the individual to submit to, genetic testing.
7 (b) This Section does not prohibit the genetic testing
8 of an employee who requests to undergo genetic testing and
9 who provides written and informed consent to genetic testing
10 to determine the employee's susceptibility or level of
11 exposure to potentially toxic chemicals or potentially toxic
12 substances in the workplace, if the employer does not
13 terminate the employee or take any other action that
14 adversely affects any term, condition, or privilege of the
15 employee's employment as a result of genetic testing.
16 (c) An employer may release genetic testing information
17 only in accordance with Section 30.
18 Section 30. Disclosure of person tested and test
19 results.
20 No person may disclose or be compelled to disclose the
21 identity of any person upon whom a genetic test is performed
22 or the results of a genetic test in a manner that permits
23 identification of the subject of the test, except to the
24 following persons:
25 (1) The subject of the test or the subject's legally
26 authorized representative. This paragraph does not create a
27 duty or obligation under which a health care provider must
28 notify the subject's spouse or legal guardian of the test
29 results, and no such duty or obligation shall be implied. No
30 civil liability or criminal sanction under this Act shall be
31 imposed for any disclosure or nondisclosure of a test result
32 to a spouse by a physician acting in good faith under this
33 paragraph. For the purpose of any proceedings, civil or
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1 criminal, the good faith of any physician acting under this
2 paragraph shall be presumed.
3 (2) Any person designated in a specific written legally
4 effective release of the test results executed by the subject
5 of the test or the subject's legally authorized
6 representative.
7 (3) An authorized agent or employee of a health facility
8 or health care provider if the health facility or health care
9 provider itself is authorized to obtain the test results, the
10 agent or employee provides patient care, and the agent or
11 employee has a need to know the information.
12 (4) A health facility or health care provider that
13 procures, processes, distributes, or uses:
14 (A) a human body part from a deceased person with
15 respect to medical information regarding that person; or
16 (B) semen provided prior to the effective date of
17 this Act for the purpose of artificial insemination.
18 (5) Health facility staff committees for the purposes of
19 conducting program monitoring, program evaluation, or service
20 reviews.
21 (6) In the case of a minor under 18 years of age, the
22 health care provider who ordered the test shall make a
23 reasonable effort to notify the minor's parent or legal
24 guardian if, in the professional judgment of the health care
25 provider, notification would be in the best interest of the
26 minor and the health care provider has first sought
27 unsuccessfully to persuade the minor to notify the parent or
28 legal guardian or after a reasonable time after the minor has
29 agreed to notify the parent or legal guardian, the health
30 care provider has reason to believe that the minor has not
31 made the notification. This paragraph shall not create a
32 duty or obligation under which a health care provider must
33 notify the minor's parent or legal guardian of the test
34 results, nor shall a duty or obligation be implied. No civil
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1 liability or criminal sanction under this Act shall be
2 imposed for any notification or non-notification of a minor's
3 test result by a health care provider acting in good faith
4 under this paragraph. For the purpose of any proceeding,
5 civil or criminal, the good faith of any health care provider
6 acting under this paragraph shall be presumed.
7 (7) All information and records held by a State agency
8 or local health authority pertaining to genetic information
9 shall be strictly confidential and exempt from copying and
10 inspection under the Freedom of Information Act. The
11 information and records shall not be released or made public
12 by the State agency or local health authority and shall not
13 be admissible as evidence nor discoverable in any action of
14 any kind in any court or before any tribunal, board, agency,
15 or person and shall be treated in the same manner as the
16 information and those records subject to the provisions of
17 Part 21 of Article VIII of the Code of Civil Procedure except
18 under the following circumstances:
19 (A) when made with the written consent of all
20 persons to whom the information pertains;
21 (B) when authorized by Section 5-4-3 of the Unified
22 Code of Corrections;
23 (C) when made for the sole purpose of implementing
24 the Phenylketonuria Testing Act and rules; or
25 (D) when made under the authorization of the
26 Illinois Parentage Act of 1984.
27 Disclosure shall be limited to those who have a need to
28 know the information, and no additional disclosures may be
29 made.
30 Section 35. Disclosure by person to whom results have
31 been disclosed. No person to whom the results of a test have
32 been disclosed may disclose the test results to another
33 person except as authorized by Section 30.
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1 Section 40. Right of action. Any person aggrieved by a
2 violation of this Act shall have a right of action in the
3 circuit court and may recover for each violation:
4 (1) Against any person who negligently violates a
5 provision of this Act, liquidated damages of $1,000 or actual
6 damages, whichever is greater.
7 (2) Against any person who intentionally or recklessly
8 violates a provision of this Act, liquidated damages of
9 $5,000 or actual damages, whichever is greater.
10 (3) Reasonable attorney fees.
11 (4) Such other relief, including an injunction, as the
12 court may deem appropriate.
13 Section 45. Damages or other relief. Nothing in this
14 Act limits the right of the subject of a test to recover
15 damages or other relief under any other applicable law.
16 Section 91. The Illinois Insurance Code is amended by
17 adding Section 356t as follows:
18 (215 ILCS 5/356t new)
19 Sec. 356t. Use of information derived from genetic
20 testing. After the effective date of this amendatory Act of
21 1997, an insurer must comply with the provisions of the
22 Genetic Information Privacy Act in connection with the
23 amendment, delivery, issuance, or renewal of, or claims for
24 or denial of coverage under, an individual or group policy of
25 accident and health insurance.
26 Section 93. The Health Maintenance Organization Act is
27 amended by changing Section 5-3 as follows:
28 (215 ILCS 125/5-3) (from Ch. 111 1/2, par. 1411.2)
29 Sec. 5-3. Insurance Code provisions.
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1 (a) Health Maintenance Organizations shall be subject to
2 the provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
3 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
4 154.6, 154.7, 154.8, 155.04, 355.2, 356m, 356t, 367i, 401,
5 401.1, 402, 403, 403A, 408, 408.2, and 412, paragraph (c) of
6 subsection (2) of Section 367, and Articles VIII 1/2, XII,
7 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
8 Code.
9 (b) For purposes of the Illinois Insurance Code, except
10 for Articles XIII and XIII 1/2, Health Maintenance
11 Organizations in the following categories are deemed to be
12 "domestic companies":
13 (1) a corporation authorized under the Medical
14 Service Plan Act, the Dental Service Plan Act, the Vision
15 Service Plan Act, the Pharmaceutical Service Plan Act,
16 the Voluntary Health Services Plan Act, or the Nonprofit
17 Health Care Service Plan Act;
18 (2) a corporation organized under the laws of this
19 State; or
20 (3) a corporation organized under the laws of
21 another state, 30% or more of the enrollees of which are
22 residents of this State, except a corporation subject to
23 substantially the same requirements in its state of
24 organization as is a "domestic company" under Article
25 VIII 1/2 of the Illinois Insurance Code.
26 (c) In considering the merger, consolidation, or other
27 acquisition of control of a Health Maintenance Organization
28 pursuant to Article VIII 1/2 of the Illinois Insurance Code,
29 (1) the Director shall give primary consideration
30 to the continuation of benefits to enrollees and the
31 financial conditions of the acquired Health Maintenance
32 Organization after the merger, consolidation, or other
33 acquisition of control takes effect;
34 (2)(i) the criteria specified in subsection (1)(b)
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1 of Section 131.8 of the Illinois Insurance Code shall not
2 apply and (ii) the Director, in making his determination
3 with respect to the merger, consolidation, or other
4 acquisition of control, need not take into account the
5 effect on competition of the merger, consolidation, or
6 other acquisition of control;
7 (3) the Director shall have the power to require
8 the following information:
9 (A) certification by an independent actuary of
10 the adequacy of the reserves of the Health
11 Maintenance Organization sought to be acquired;
12 (B) pro forma financial statements reflecting
13 the combined balance sheets of the acquiring company
14 and the Health Maintenance Organization sought to be
15 acquired as of the end of the preceding year and as
16 of a date 90 days prior to the acquisition, as well
17 as pro forma financial statements reflecting
18 projected combined operation for a period of 2
19 years;
20 (C) a pro forma business plan detailing an
21 acquiring party's plans with respect to the
22 operation of the Health Maintenance Organization
23 sought to be acquired for a period of not less than
24 3 years; and
25 (D) such other information as the Director
26 shall require.
27 (d) The provisions of Article VIII 1/2 of the Illinois
28 Insurance Code and this Section 5-3 shall apply to the sale
29 by any health maintenance organization of greater than 10% of
30 its enrollee population (including without limitation the
31 health maintenance organization's right, title, and interest
32 in and to its health care certificates).
33 (e) In considering any management contract or service
34 agreement subject to Section 141.1 of the Illinois Insurance
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1 Code, the Director (i) shall, in addition to the criteria
2 specified in Section 141.2 of the Illinois Insurance Code,
3 take into account the effect of the management contract or
4 service agreement on the continuation of benefits to
5 enrollees and the financial condition of the health
6 maintenance organization to be managed or serviced, and (ii)
7 need not take into account the effect of the management
8 contract or service agreement on competition.
9 (f) Except for small employer groups as defined in the
10 Small Employer Rating, Renewability and Portability Health
11 Insurance Act and except for medicare supplement policies as
12 defined in Section 363 of the Illinois Insurance Code, a
13 Health Maintenance Organization may by contract agree with a
14 group or other enrollment unit to effect refunds or charge
15 additional premiums under the following terms and conditions:
16 (i) the amount of, and other terms and conditions
17 with respect to, the refund or additional premium are set
18 forth in the group or enrollment unit contract agreed in
19 advance of the period for which a refund is to be paid or
20 additional premium is to be charged (which period shall
21 not be less than one year); and
22 (ii) the amount of the refund or additional premium
23 shall not exceed 20% of the Health Maintenance
24 Organization's profitable or unprofitable experience with
25 respect to the group or other enrollment unit for the
26 period (and, for purposes of a refund or additional
27 premium, the profitable or unprofitable experience shall
28 be calculated taking into account a pro rata share of the
29 Health Maintenance Organization's administrative and
30 marketing expenses, but shall not include any refund to
31 be made or additional premium to be paid pursuant to this
32 subsection (f)). The Health Maintenance Organization and
33 the group or enrollment unit may agree that the
34 profitable or unprofitable experience may be calculated
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1 taking into account the refund period and the immediately
2 preceding 2 plan years.
3 The Health Maintenance Organization shall include a
4 statement in the evidence of coverage issued to each enrollee
5 describing the possibility of a refund or additional premium,
6 and upon request of any group or enrollment unit, provide to
7 the group or enrollment unit a description of the method used
8 to calculate (1) the Health Maintenance Organization's
9 profitable experience with respect to the group or enrollment
10 unit and the resulting refund to the group or enrollment unit
11 or (2) the Health Maintenance Organization's unprofitable
12 experience with respect to the group or enrollment unit and
13 the resulting additional premium to be paid by the group or
14 enrollment unit.
15 In no event shall the Illinois Health Maintenance
16 Organization Guaranty Association be liable to pay any
17 contractual obligation of an insolvent organization to pay
18 any refund authorized under this Section.
19 (Source: P.A. 88-313; 89-90, eff. 6-30-95.)
20 Section 95. The Limited Health Service Organization Act
21 is amended by changing Section 4003 as follows:
22 (215 ILCS 130/4003) (from Ch. 73, par. 1504-3)
23 Sec. 4003. Illinois Insurance Code provisions. Limited
24 health service organizations shall be subject to the
25 provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
26 141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
27 154.6, 154.7, 154.8, 155.04, 355.2, 356t, 401, 401.1, 402,
28 403, 403A, 408, 408.2, and 412, and Articles VIII 1/2, XII,
29 XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
30 Code. For purposes of the Illinois Insurance Code, except
31 for Articles XIII and XIII 1/2, limited health service
32 organizations in the following categories are deemed to be
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1 domestic companies:
2 (1) a corporation under the laws of this State; or
3 (2) a corporation organized under the laws of
4 another state, 30% of more of the enrollees of which are
5 residents of this State, except a corporation subject to
6 substantially the same requirements in its state of
7 organization as is a domestic company under Article VIII
8 1/2 of the Illinois Insurance Code.
9 (Source: P.A. 86-600; 87-587; 87-1090.)
10 Section 97. The Voluntary Health Services Plans Act is
11 amended by changing Section 10 as follows:
12 (215 ILCS 165/10) (from Ch. 32, par. 604)
13 Sec. 10. Application of Insurance Code provisions.
14 Health services plan corporations and all persons interested
15 therein or dealing therewith shall be subject to the
16 provisions of Article XII 1/2 and Sections 3.1, 133, 140,
17 143, 143c, 149, 354, 355.2, 356r, 356t, 367.2, 401, 401.1,
18 402, 403, 403A, 408, 408.2, and 412, and paragraphs (7) and
19 (15) of Section 367 of the Illinois Insurance Code.
20 (Source: P.A. 89-514, eff. 7-17-96.)".