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
21    Phenylketonuria Testing Act 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 Screening Phenylketonuria Testing Act.
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   and   such  other  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 Screening Phenylketonuria
21             Testing Act 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.".