093_SB1198sam003 LRB093 10969 LRD 13770 a 1 AMENDMENT TO SENATE BILL 1198 2 AMENDMENT NO. . Amend Senate Bill 1198 by replacing 3 everything after the enacting clause with the following: 4 "Section 5. The Department of Public Health Powers and 5 Duties Law of the Civil Administrative Code of Illinois is 6 amended by changing Section 2310-90 as follows: 7 (20 ILCS 2310/2310-90) (was 20 ILCS 2310/55.09) 8 Sec. 2310-90. Laboratories; fees; Public Health 9 Laboratory Services Revolving Fund. To maintain physical, 10 chemical, bacteriological, and biological laboratories; to 11 make examinations of milk, water, atmosphere, sewage, wastes, 12 and other substances, and equipment and processes relating 13 thereto; to make diagnostic tests for diseases and tests for 14 the evaluation of health hazards considered necessary for the 15 protection of the people of the State; and to assess a 16 reasonable fee for services provided as established by 17 regulation, under the Illinois Administrative Procedure Act, 18 which shall not exceed the Department's actual costs to 19 provide these services. 20 Excepting fees collected under the Newborn Screening 21Phenylketonuria TestingAct and the Lead Poisoning Prevention 22 Act, all fees shall be deposited into the Public Health -2- LRB093 10969 LRD 13770 a 1 Laboratory Services Revolving Fund. Other State and federal 2 funds related to laboratory services may also be deposited 3 into the Fund, and all interest that accrues on the moneys in 4 the Fund shall be deposited into the Fund. 5 Moneys shall be appropriated from the Fund solely for the 6 purposes of testing specimens submitted in support of 7 Department programs established for the protection of human 8 health, welfare, and safety, and for testing specimens 9 submitted by physicians and other health care providers, to 10 determine whether chemically hazardous, biologically 11 infectious substances, or other disease causing conditions 12 are present. 13 (Source: P.A. 91-239, eff. 1-1-00.) 14 Section 10. The Phenylketonuria Testing Act is amended 15 by changing Sections 0.01, 1, and 1.5 and adding Sections 16 3.1, 3.2, and 3.3 as follows: 17 (410 ILCS 240/0.01) (from Ch. 111 1/2, par. 4902.9) 18 Sec. 0.01. Short title. This Act may be cited as the 19 Newborn ScreeningPhenylketonuria TestingAct. 20 (Source: P.A. 86-1324.) 21 (410 ILCS 240/1) (from Ch. 111 1/2, par. 4903) 22 Sec. 1. The Illinois Department of Public Health shall 23 promulgate and enforce rules and regulations requiring that 24 every newborn be subjected to tests for phenylketonuria, 25 hypothyroidism, galactosemia andsuchother metabolic 26 diseases as the Department may deem necessary from time to 27 time. In addition, the Department shall adopt rules 28 requiring that every newborn whose mother's Human 29 Immunodeficiency Virus (HIV) status is unknown shall be 30 tested for HIV antibodies as a routine component of newborn 31 care, subject to parental or guardian right of refusal. The -3- LRB093 10969 LRD 13770 a 1 Department is empowered to promulgate such additional rules 2 and regulations as are found necessary for the administration 3 of this Act, including mandatory reporting of the results of 4 all tests for these conditions to the Illinois Department of 5 Public Health. To protect the confidentiality of test 6 results, all HIV-positive results shall be reported in 7 accordance with State laws and rules, including Section 4 of 8 the AIDS Registry Act and 77 Ill. Admin. Code Section 697.210 9 and 77 Ill. Admin. Code Section 693.30. 10 (Source: P.A. 83-87.) 11 (410 ILCS 240/1.5) 12 Sec. 1.5. Definitions. In this Act: 13 "Accredited laboratory" means any laboratory that holds a 14 valid certificate issued under the Clinical Laboratory 15 Improvement Amendments of 1988, 102 Stat. 2903, 42 U.S.C. 16 263a, as amended, and that reports its screening results by 17 using normal pediatric reference ranges. 18 "Expanded screening" means screening for genetic and 19 metabolic disorders, including but not limited to amino acid 20 disorders, organic acid disorders, fatty acid oxidation 21 disorders, and other abnormal profiles, in newborn infants 22 that can be detected through the use of a tandem mass 23 spectrometer. 24 "HIV-related test" means a test that detects the presence 25 of HIV antibodies. 26 "Tandem mass spectrometer" means an analytical instrument 27 used to detect numerous genetic and metabolic disorders at 28 one time. 29 (Source: P.A. 92-701, eff. 7-19-02.) 30 (410 ILCS 240/3.1 new) 31 Section 3.1. Powers and duties of Department; HIV tests 32 and education; penalty. -4- LRB093 10969 LRD 13770 a 1 (a) The Department of Public Health shall administer the 2 provisions of this Act and shall: 3 (1) Institute and carry on an intensive educational 4 program among physicians, hospitals, public health 5 nurses, and the public concerning HIV. This educational 6 program shall include information about the nature of the 7 disease and the diagnostic test for the detection of the 8 disease that should be done during pregnancy or for a 9 newborn within 48 hours of birth (if the HIV status of 10 the mother is unknown), subject to the right of refusal, 11 in order that measures may be taken to prevent HIV 12 infection. 13 (2) Establish a comprehensive program for the 14 detection of antibodies to the HIV virus. The program 15 must include instructions on but need not be limited to: 16 (i) the requirements of this Act; 17 (ii) the benefits of HIV testing for pregnant 18 women and newborns whose mothers' HIV statuses are 19 unknown; 20 (iii) the possible interventions to prevent 21 HIV transmission from a pregnant woman to her fetus 22 or newborn; 23 (iv) the side effects of such interventions; 24 (v) the statutory confidentiality provisions 25 that relate to HIV and acquired immune deficiency 26 syndrome ("AIDS") testing; and 27 (vi) resources available for health care, case 28 management, counseling, and treatment for people 29 with HIV and AIDS. 30 (3) Promulgate rules governing the implementation 31 of the program required under item (2), including the 32 administration of counseling, testing, disclosure of a 33 child's test results to the child's mother or other 34 designated guardian, referral to follow-up care, and -5- LRB093 10969 LRD 13770 a 1 educational activities relating to such testing. 2 If a mother has had an HIV-related test, the person 3 responsible for testing under this Section may omit an 4 HIV-related test for the mother's newborn. 5 (b) Any person violating the provisions of this Section 6 is guilty of a petty offense. 7 (410 ILCS 240/3.2 new) 8 Section 3.2. Administration of HIV-related tests to 9 newborns. The person in charge of each institution that 10 cares for newborn infants shall cause to have administered an 11 HIV-related test to every newborn infant in its care whose 12 mother's HIV status is unknown. Any health care provider who 13 performs an HIV-related test on a newborn under the 14 provisions of this Section shall report the results to the 15 mother or other designated guardian of the newborn within 48 16 hours of the birth of the newborn. The provider shall refer 17 any newborn who tests positive for HIV to an HIV case manager 18 and an appropriate health care provider. The provider shall 19 also give the mother a list of support and health care 20 services for people with HIV and AIDS. Any person violating 21 the provisions of this Section is guilty of a petty offense. 22 (410 ILCS 240/3.3 new) 23 Section 3.3. Objections of parent or guardian. 24 (a) The provisions of this Act related to HIV testing do 25 not apply to a child if his or her parent or guardian objects 26 to the HIV testing for any reason. Documentation of such 27 objection shall be written by the physician or other person 28 whose duty is to administer such tests under this Act. 29 (b) This Act applies to all screening tests covered by 30 the Act, except HIV when the parent or guardian of the child 31 objects thereto on the grounds that such test conflicts with 32 his or her religious tenets and practices. Documentation of -6- LRB093 10969 LRD 13770 a 1 such objection shall be written by the physician or other 2 person whose duty it is to administer such tests under this 3 Act. 4 Section 15. The Genetic Information Privacy Act is 5 amended by changing Section 30 as follows: 6 (410 ILCS 513/30) 7 Sec. 30. Disclosure of person tested and test results. 8 (a) No person may disclose or be compelled to disclose 9 the identity of any person upon whom a genetic test is 10 performed or the results of a genetic test in a manner that 11 permits identification of the subject of the test, except to 12 the following persons: 13 (1) The subject of the test or the subject's 14 legally authorized representative. This paragraph does 15 not create a duty or obligation under which a health care 16 provider must notify the subject's spouse or legal 17 guardian of the test results, and no such duty or 18 obligation shall be implied. No civil liability or 19 criminal sanction under this Act shall be imposed for any 20 disclosure or nondisclosure of a test result to a spouse 21 by a physician acting in good faith under this paragraph. 22 For the purpose of any proceedings, civil or criminal, 23 the good faith of any physician acting under this 24 paragraph shall be presumed. 25 (2) Any person designated in a specific written 26 legally effective release of the test results executed by 27 the subject of the test or the subject's legally 28 authorized representative. 29 (3) An authorized agent or employee of a health 30 facility or health care provider if the health facility 31 or health care provider itself is authorized to obtain 32 the test results, the agent or employee provides patient -7- LRB093 10969 LRD 13770 a 1 care, and the agent or employee has a need to know the 2 information in order to conduct the tests or provide care 3 or treatment. 4 (4) A health facility or health care provider that 5 procures, processes, distributes, or uses: 6 (A) a human body part from a deceased person 7 with respect to medical information regarding that 8 person; or 9 (B) semen provided prior to the effective date 10 of this Act for the purpose of artificial 11 insemination. 12 (5) Health facility staff committees for the 13 purposes of conducting program monitoring, program 14 evaluation, or service reviews. 15 (6) In the case of a minor under 18 years of age, 16 the health care provider who ordered the test shall make 17 a reasonable effort to notify the minor's parent or legal 18 guardian if, in the professional judgment of the health 19 care provider, notification would be in the best interest 20 of the minor and the health care provider has first 21 sought unsuccessfully to persuade the minor to notify the 22 parent or legal guardian or after a reasonable time after 23 the minor has agreed to notify the parent or legal 24 guardian, the health care provider has reason to believe 25 that the minor has not made the notification. This 26 paragraph shall not create a duty or obligation under 27 which a health care provider must notify the minor's 28 parent or legal guardian of the test results, nor shall a 29 duty or obligation be implied. No civil liability or 30 criminal sanction under this Act shall be imposed for any 31 notification or non-notification of a minor's test result 32 by a health care provider acting in good faith under this 33 paragraph. For the purpose of any proceeding, civil or 34 criminal, the good faith of any health care provider -8- LRB093 10969 LRD 13770 a 1 acting under this paragraph shall be presumed. 2 (7) All information and records held by a State 3 agency or local health authority pertaining to genetic 4 information shall be strictly confidential and exempt 5 from copying and inspection under the Freedom of 6 Information Act. The information and records shall not 7 be released or made public by the State agency or local 8 health authority and shall not be admissible as evidence 9 nor discoverable in any action of any kind in any court 10 or before any tribunal, board, agency, or person and 11 shall be treated in the same manner as the information 12 and those records subject to the provisions of Part 21 of 13 Article VIII of the Code of Civil Procedure except under 14 the following circumstances: 15 (A) when made with the written consent of all 16 persons to whom the information pertains; 17 (B) when authorized by Section 5-4-3 of the 18 Unified Code of Corrections; 19 (C) when made for the sole purpose of 20 implementing the Newborn ScreeningPhenylketonuria21TestingAct and rules; or 22 (D) when made under the authorization of the 23 Illinois Parentage Act of 1984. 24 Disclosure shall be limited to those who have a need to 25 know the information, and no additional disclosures may be 26 made. 27 (b) Disclosure by an insurer in accordance with the 28 requirements of the Article XL of the Illinois Insurance Code 29 shall be deemed compliance with this Section. 30 (Source: P.A. 90-25, eff. 1-1-98.) 31 (410 ILCS 240/3 rep.) 32 Section 20. The Phenylketonuria Testing Act is amended by 33 repealing Section 3. -9- LRB093 10969 LRD 13770 a 1 Section 99. Effective date. This Act takes effect upon 2 becoming law.".