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90_HB0008enr 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 Enrolled 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 HB0008 Enrolled -2- LRB9000863JSgc 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, HB0008 Enrolled -3- LRB9000863JSgc 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 HB0008 Enrolled -4- LRB9000863JSgc 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 HB0008 Enrolled -5- LRB9000863JSgc 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 HB0008 Enrolled -6- LRB9000863JSgc 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 Enrolled -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. HB0008 Enrolled -8- LRB9000863JSgc 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, HB0008 Enrolled -9- LRB9000863JSgc 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 HB0008 Enrolled -10- LRB9000863JSgc 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, HB0008 Enrolled -11- LRB9000863JSgc 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. HB0008 Enrolled -12- LRB9000863JSgc 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 HB0008 Enrolled -13- LRB9000863JSgc 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.)