Public Act 90-0025 of the 90th General Assembly
Public Act 90-0025
HB0008 Enrolled LRB9000863JSgc
AN ACT concerning genetic information, amending named
Acts.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 1. Short title. This Act may be cited as the
Genetic Information Privacy Act.
Section 5. Legislative findings; intent. The General
Assembly finds that:
(1) The use of genetic testing can be valuable to
an individual.
(2) Despite existing laws, regulations, and
professional standards which require or promote voluntary
and confidential use of genetic testing information, many
members of the public are deterred from seeking genetic
testing because of fear that test results will be
disclosed without consent or be used in a discriminatory
manner.
(3) The public health will be served by
facilitating voluntary and confidential nondiscriminatory
use of genetic testing information.
Section 10. Definitions. As used in this Act:
"Genetic testing" means a test of a person's genes, gene
products, or chromosomes for abnormalities or deficiencies,
including carrier status, that (i) are linked to physical or
mental disorders or impairments, (ii) indicate a
susceptibility to illness, disease, impairment, or other
disorders, whether physical or mental, or (iii) demonstrate
genetic or chromosomal damage due to environmental factors.
Genetic testing does not include routine physical
measurements; chemical, blood and urine analyses that are
widely accepted and in use in clinical practice; tests for
use of drugs; and tests for the presence of the human
immunodeficiency virus.
"Insurer" means (i) an entity that transacts an insurance
business and (ii) a managed care plan.
"Managed care plan" means a plan that establishes,
operates, or maintains a network of health care providers
that have entered into agreements with the plan to provide
health care services to enrollees where the plan has the
ultimate and direct contractual obligation to the enrollee to
arrange for the provision of or pay for services through:
(1) organizational arrangements for ongoing quality
assurance, utilization review programs, or dispute
resolution; or
(2) financial incentives for persons enrolled in
the plan to use the participating providers and
procedures covered by the plan.
A managed care plan may be established or operated by any
entity including a licensed insurance company, hospital or
medical service plan, health maintenance organization,
limited health service organization, preferred provider
organization, third party administrator, or an employer or
employee organization.
Section 15. Confidentiality of genetic information.
(a) Except as otherwise provided in this Act, genetic
testing and information derived from genetic testing is
confidential and privileged and may be released only to the
individual tested and to persons specifically authorized, in
writing in accordance with Section 30, by that individual to
receive the information. Except as otherwise provided in
subsection (b) and in Section 30, this information shall not
be admissible as evidence, nor discoverable in any action of
any kind in any court, or before any tribunal, board, agency,
or person pursuant to Part 21 of Article VIII of the Code of
Civil Procedure. No liability shall attach to any hospital,
physician, or other health care provider for compliance with
the provisions of this Act including a specific written
release by the individual in accordance with this Act.
(b) When a biological sample is legally obtained by a
peace officer for use in a criminal investigation or
prosecution, information derived from genetic testing of that
sample may be disclosed for identification purposes to
appropriate law enforcement authorities conducting the
investigation or prosecution and may be used in accordance
with Section 5-4-3 of the Unified Code of Corrections. The
information may be used for identification purposes during
the course of the investigation or prosecution with respect
to the individual tested without the consent of the
individual and shall be admissible as evidence in court.
The information shall be confidential and may be
disclosed only for purposes of criminal investigation or
prosecution.
(c) If the subject of the information requested by law
enforcement is found innocent of the offense or otherwise not
criminally penalized, then the court records shall be
expunged by the court within 30 days after the final legal
proceeding. The court shall notify the subject of the
information of the expungement of the records in writing.
(d) Results of genetic testing that indicate that the
individual tested is at the time of the test afflicted with a
disease, whether or not currently symptomatic, are not
subject to the confidentiality requirements of this Act.
Section 20. Use of genetic testing information for
insurance purposes.
(a) An insurer may not seek information derived from
genetic testing for use in connection with a policy of
accident and health insurance. Except as provided in
subsection (b), an insurer that receives information derived
from genetic testing may not use the information for a
nontherapeutic purpose as it relates to a policy of accident
and health insurance.
(b) An insurer may consider the results of genetic
testing in connection with a policy of accident and health
insurance if the individual voluntarily submits the results
and the results are favorable to the individual.
(c) An insurer that possesses information derived from
genetic testing may not release the information to a third
party, except as specified in Section 30.
Section 22. Tests to determine inherited characteristics
in paternity proceedings. Nothing in this Act shall be
construed to affect or restrict in any way the ordering of or
use of results from deoxyribonucleic acid (DNA) testing or
other tests to determine inherited characteristics by the
court in a judicial proceeding under the Illinois Parentage
Act of 1984 or by the Illinois Department of Public Aid in an
administrative paternity proceeding under Article X of the
Illinois Public Aid Code and rules promulgated under that
Article.
Section 25. Use of genetic testing information by
employers.
(a) An employer shall treat genetic testing information
in such a manner that is consistent with the requirements of
federal law, including but not limited to the Americans with
Disabilities Act.
(b) An employer may release genetic testing information
only in accordance with Section 30.
Section 30. Disclosure of person tested and test
results.
(a) No person may disclose or be compelled to disclose
the identity of any person upon whom a genetic test is
performed or the results of a genetic test in a manner that
permits identification of the subject of the test, except to
the following persons:
(1) The subject of the test or the subject's
legally authorized representative. This paragraph does
not create a duty or obligation under which a health care
provider must notify the subject's spouse or legal
guardian of the test results, and no such duty or
obligation shall be implied. No civil liability or
criminal sanction under this Act shall be imposed for any
disclosure or nondisclosure of a test result to a spouse
by a physician acting in good faith under this paragraph.
For the purpose of any proceedings, civil or criminal,
the good faith of any physician acting under this
paragraph shall be presumed.
(2) Any person designated in a specific written
legally effective release of the test results executed by
the subject of the test or the subject's legally
authorized representative.
(3) An authorized agent or employee of a health
facility or health care provider if the health facility
or health care provider itself is authorized to obtain
the test results, the agent or employee provides patient
care, and the agent or employee has a need to know the
information in order to conduct the tests or provide care
or treatment.
(4) A health facility or health care provider that
procures, processes, distributes, or uses:
(A) a human body part from a deceased person
with respect to medical information regarding that
person; or
(B) semen provided prior to the effective date
of this Act for the purpose of artificial
insemination.
(5) Health facility staff committees for the
purposes of conducting program monitoring, program
evaluation, or service reviews.
(6) In the case of a minor under 18 years of age,
the health care provider who ordered the test shall make
a reasonable effort to notify the minor's parent or legal
guardian if, in the professional judgment of the health
care provider, notification would be in the best interest
of the minor and the health care provider has first
sought unsuccessfully to persuade the minor to notify the
parent or legal guardian or after a reasonable time after
the minor has agreed to notify the parent or legal
guardian, the health care provider has reason to believe
that the minor has not made the notification. This
paragraph shall not create a duty or obligation under
which a health care provider must notify the minor's
parent or legal guardian of the test results, nor shall a
duty or obligation be implied. No civil liability or
criminal sanction under this Act shall be imposed for any
notification or non-notification of a minor's test result
by a health care provider acting in good faith under this
paragraph. For the purpose of any proceeding, civil or
criminal, the good faith of any health care provider
acting under this paragraph shall be presumed.
(7) All information and records held by a State
agency or local health authority pertaining to genetic
information shall be strictly confidential and exempt
from copying and inspection under the Freedom of
Information Act. The information and records shall not
be released or made public by the State agency or local
health authority and shall not be admissible as evidence
nor discoverable in any action of any kind in any court
or before any tribunal, board, agency, or person and
shall be treated in the same manner as the information
and those records subject to the provisions of Part 21 of
Article VIII of the Code of Civil Procedure except under
the following circumstances:
(A) when made with the written consent of all
persons to whom the information pertains;
(B) when authorized by Section 5-4-3 of the
Unified Code of Corrections;
(C) when made for the sole purpose of
implementing the Phenylketonuria Testing Act and
rules; or
(D) when made under the authorization of the
Illinois Parentage Act of 1984.
Disclosure shall be limited to those who have a need to
know the information, and no additional disclosures may be
made.
(b) Disclosure by an insurer in accordance with the
requirements of the Article XL of the Illinois Insurance Code
shall be deemed compliance with this Section.
Section 35. Disclosure by person to whom results have
been disclosed. No person to whom the results of a test have
been disclosed may disclose the test results to another
person except as authorized by Section 30.
Section 40. Right of action.
(a) Any person aggrieved by a violation of this Act
shall have a right of action in the circuit court and may
recover for each violation:
(1) Against any person who negligently violates a
provision of this Act, liquidated damages of $1,000 or
actual damages, whichever is greater.
(2) Against any person who intentionally or
recklessly violates a provision of this Act, liquidated
damages of $5,000 or actual damages, whichever is
greater.
(3) Reasonable attorney fees.
(4) Such other relief, including an injunction, as
the court may deem appropriate.
(b) Article XL of the Illinois Insurance Code shall
provide the exclusive remedy for violations of Section 30 by
insurers.
Section 45. Damages or other relief. Nothing in this
Act limits the right of the subject of a test to recover
damages or other relief under any other applicable law.
Section 91. The Illinois Insurance Code is amended by
adding Section 356t as follows:
(215 ILCS 5/356t new)
Sec. 356t. Use of information derived from genetic
testing. After the effective date of this amendatory Act of
1997, an insurer must comply with the provisions of the
Genetic Information Privacy Act in connection with the
amendment, delivery, issuance, or renewal of, or claims for
or denial of coverage under, an individual or group policy of
accident and health insurance.
Section 93. The Health Maintenance Organization Act is
amended by changing Section 5-3 as follows:
(215 ILCS 125/5-3) (from Ch. 111 1/2, par. 1411.2)
Sec. 5-3. Insurance Code provisions.
(a) Health Maintenance Organizations shall be subject to
the provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
154.6, 154.7, 154.8, 155.04, 355.2, 356m, 356t, 367i, 401,
401.1, 402, 403, 403A, 408, 408.2, and 412, paragraph (c) of
subsection (2) of Section 367, and Articles VIII 1/2, XII,
XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
Code.
(b) For purposes of the Illinois Insurance Code, except
for Articles XIII and XIII 1/2, Health Maintenance
Organizations in the following categories are deemed to be
"domestic companies":
(1) a corporation authorized under the Medical
Service Plan Act, the Dental Service Plan Act, the Vision
Service Plan Act, the Pharmaceutical Service Plan Act,
the Voluntary Health Services Plan Act, or the Nonprofit
Health Care Service Plan Act;
(2) a corporation organized under the laws of this
State; or
(3) a corporation organized under the laws of
another state, 30% or more of the enrollees of which are
residents of this State, except a corporation subject to
substantially the same requirements in its state of
organization as is a "domestic company" under Article
VIII 1/2 of the Illinois Insurance Code.
(c) In considering the merger, consolidation, or other
acquisition of control of a Health Maintenance Organization
pursuant to Article VIII 1/2 of the Illinois Insurance Code,
(1) the Director shall give primary consideration
to the continuation of benefits to enrollees and the
financial conditions of the acquired Health Maintenance
Organization after the merger, consolidation, or other
acquisition of control takes effect;
(2)(i) the criteria specified in subsection (1)(b)
of Section 131.8 of the Illinois Insurance Code shall not
apply and (ii) the Director, in making his determination
with respect to the merger, consolidation, or other
acquisition of control, need not take into account the
effect on competition of the merger, consolidation, or
other acquisition of control;
(3) the Director shall have the power to require
the following information:
(A) certification by an independent actuary of
the adequacy of the reserves of the Health
Maintenance Organization sought to be acquired;
(B) pro forma financial statements reflecting
the combined balance sheets of the acquiring company
and the Health Maintenance Organization sought to be
acquired as of the end of the preceding year and as
of a date 90 days prior to the acquisition, as well
as pro forma financial statements reflecting
projected combined operation for a period of 2
years;
(C) a pro forma business plan detailing an
acquiring party's plans with respect to the
operation of the Health Maintenance Organization
sought to be acquired for a period of not less than
3 years; and
(D) such other information as the Director
shall require.
(d) The provisions of Article VIII 1/2 of the Illinois
Insurance Code and this Section 5-3 shall apply to the sale
by any health maintenance organization of greater than 10% of
its enrollee population (including without limitation the
health maintenance organization's right, title, and interest
in and to its health care certificates).
(e) In considering any management contract or service
agreement subject to Section 141.1 of the Illinois Insurance
Code, the Director (i) shall, in addition to the criteria
specified in Section 141.2 of the Illinois Insurance Code,
take into account the effect of the management contract or
service agreement on the continuation of benefits to
enrollees and the financial condition of the health
maintenance organization to be managed or serviced, and (ii)
need not take into account the effect of the management
contract or service agreement on competition.
(f) Except for small employer groups as defined in the
Small Employer Rating, Renewability and Portability Health
Insurance Act and except for medicare supplement policies as
defined in Section 363 of the Illinois Insurance Code, a
Health Maintenance Organization may by contract agree with a
group or other enrollment unit to effect refunds or charge
additional premiums under the following terms and conditions:
(i) the amount of, and other terms and conditions
with respect to, the refund or additional premium are set
forth in the group or enrollment unit contract agreed in
advance of the period for which a refund is to be paid or
additional premium is to be charged (which period shall
not be less than one year); and
(ii) the amount of the refund or additional premium
shall not exceed 20% of the Health Maintenance
Organization's profitable or unprofitable experience with
respect to the group or other enrollment unit for the
period (and, for purposes of a refund or additional
premium, the profitable or unprofitable experience shall
be calculated taking into account a pro rata share of the
Health Maintenance Organization's administrative and
marketing expenses, but shall not include any refund to
be made or additional premium to be paid pursuant to this
subsection (f)). The Health Maintenance Organization and
the group or enrollment unit may agree that the
profitable or unprofitable experience may be calculated
taking into account the refund period and the immediately
preceding 2 plan years.
The Health Maintenance Organization shall include a
statement in the evidence of coverage issued to each enrollee
describing the possibility of a refund or additional premium,
and upon request of any group or enrollment unit, provide to
the group or enrollment unit a description of the method used
to calculate (1) the Health Maintenance Organization's
profitable experience with respect to the group or enrollment
unit and the resulting refund to the group or enrollment unit
or (2) the Health Maintenance Organization's unprofitable
experience with respect to the group or enrollment unit and
the resulting additional premium to be paid by the group or
enrollment unit.
In no event shall the Illinois Health Maintenance
Organization Guaranty Association be liable to pay any
contractual obligation of an insolvent organization to pay
any refund authorized under this Section.
(Source: P.A. 88-313; 89-90, eff. 6-30-95.)
Section 95. The Limited Health Service Organization Act
is amended by changing Section 4003 as follows:
(215 ILCS 130/4003) (from Ch. 73, par. 1504-3)
Sec. 4003. Illinois Insurance Code provisions. Limited
health service organizations shall be subject to the
provisions of Sections 133, 134, 137, 140, 141.1, 141.2,
141.3, 143, 143c, 147, 148, 149, 151, 152, 153, 154, 154.5,
154.6, 154.7, 154.8, 155.04, 355.2, 356t, 401, 401.1, 402,
403, 403A, 408, 408.2, and 412, and Articles VIII 1/2, XII,
XII 1/2, XIII, XIII 1/2, and XXVI of the Illinois Insurance
Code. For purposes of the Illinois Insurance Code, except
for Articles XIII and XIII 1/2, limited health service
organizations in the following categories are deemed to be
domestic companies:
(1) a corporation under the laws of this State; or
(2) a corporation organized under the laws of
another state, 30% of more of the enrollees of which are
residents of this State, except a corporation subject to
substantially the same requirements in its state of
organization as is a domestic company under Article VIII
1/2 of the Illinois Insurance Code.
(Source: P.A. 86-600; 87-587; 87-1090.)
Section 97. The Voluntary Health Services Plans Act is
amended by changing Section 10 as follows:
(215 ILCS 165/10) (from Ch. 32, par. 604)
Sec. 10. Application of Insurance Code provisions.
Health services plan corporations and all persons interested
therein or dealing therewith shall be subject to the
provisions of Article XII 1/2 and Sections 3.1, 133, 140,
143, 143c, 149, 354, 355.2, 356r, 356t, 367.2, 401, 401.1,
402, 403, 403A, 408, 408.2, and 412, and paragraphs (7) and
(15) of Section 367 of the Illinois Insurance Code.
(Source: P.A. 89-514, eff. 7-17-96.)