State of Illinois
90th General Assembly
Legislation

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90_HB0008eng

      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 Engrossed                               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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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 Engrossed            -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.)

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