Public Act 095-0927
 
SB2399 Enrolled LRB095 19767 KBJ 46141 b

    AN ACT concerning health.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 5. The Genetic Information Privacy Act is amended
by changing Sections 10, 15, 25, and 40 and by adding Section
50 as follows:
 
    (410 ILCS 513/10)
    Sec. 10. Definitions. As used in this Act:
    "Employer" means the State of Illinois, any unit of local
government, and any board, commission, department,
institution, or school district, any party to a public
contract, any joint apprenticeship or training committee
within the State, and every other person employing employees
within the State.
    "Employment agency" means both public and private
employment agencies and any person, labor organization, or
labor union having a hiring hall or hiring office regularly
undertaking, with or without compensation, to procure
opportunities to work, or to procure, recruit, refer, or place
employees.
    "Family member" means, with respect to an individual, (i)
the spouse of the individual; (ii) a dependent child of the
individual, including a child who is born to or placed for
adoption with the individual; (iii) any other person qualifying
as a covered dependent under a managed care plan; and (iv) all
other individuals related by blood or law to the individual or
the spouse or child described in subsections (i) through (iii)
of this definition.
    "Genetic information" means, with respect to any
individual, information about (i) the individual's genetic
tests; (ii) the genetic tests of a family member of the
individual; and (iii) the manifestation or possible
manifestation of a disease or disorder in a family member of
the individual. Genetic information does not include
information about the sex or age of any individual.
    "Genetic monitoring" means the periodic examination of
employees to evaluate acquired modifications to their genetic
material, such as chromosomal damage or evidence of increased
occurrence of mutations that may have developed in the course
of employment due to exposure to toxic substances in the
workplace in order to identify, evaluate, and respond to
effects of or control adverse environmental exposures in the
workplace.
    "Genetic services" means a genetic test, genetic
counseling, including obtaining, interpreting, or assessing
genetic information, or genetic education.
    "Genetic testing" and "genetic test" mean means a test or
analysis of human a person's genes, gene products, DNA, RNA, or
chromosomes, proteins, or metabolites that detect genotypes,
mutations, chromosomal changes, 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 and genetic tests do 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; analyses of proteins or metabolites
that do not detect genotypes, mutations, chromosomal changes,
abnormalities, or deficiencies; or analyses of proteins or
metabolites that are directly related to a manifested disease,
disorder, or pathological condition that could reasonably be
detected by a health care professional with appropriate
training and expertise in the field of medicine involved.
    "Insurer" means (i) an entity that transacts an insurance
business and (ii) a managed care plan.
    "Licensing agency" means a board, commission, committee,
council, department, or officers, except a judicial officer, in
this State or any political subdivision authorized to grant,
deny, renew, revoke, suspend, annul, withdraw, or amend a
license or certificate of registration.
    "Labor organization" includes any organization, labor
union, craft union, or any voluntary unincorporated
association designed to further the cause of the rights of
union labor that is constituted for the purpose, in whole or in
part, of collective bargaining or of dealing with employers
concerning grievances, terms or conditions of employment, or
apprenticeships or applications for apprenticeships, or of
other mutual aid or protection in connection with employment,
including apprenticeships or applications for apprenticeships.
    "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.
(Source: P.A. 90-25, eff. 1-1-98.)
 
    (410 ILCS 513/15)
    Sec. 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.
    Genetic testing and genetic information derived thereof
shall be admissible as evidence and discoverable, subject to a
protective order, in any actions alleging a violation of this
Act, seeking to enforce Section 30 of this Act through the
Illinois Insurance Code, alleging discriminatory genetic
testing or use of genetic information under the Illinois Human
Rights Act or the Illinois Civil Rights Act of 2003, or
requesting a workers' compensation claim under the Workers'
Compensation Act.
    (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.
(Source: P.A. 90-25, eff. 1-1-98.)
 
    (410 ILCS 513/25)
    Sec. 25. Use of genetic testing information by employers.
    (a) An employer, employment agency, labor organization,
and licensing agency shall treat genetic testing and genetic
information in such a manner that is consistent with the
requirements of federal law, including but not limited to the
Genetic Information Nondiscrimination Act of 2008, the
Americans with Disabilities Act, Title VII of the Civil Rights
Act of 1964, the Family and Medical Leave Act of 1993, the
Occupational Safety and Health Act of 1970, the Federal Mine
Safety and Health Act of 1977, or the Atomic Energy Act of
1954.
    (b) An employer may release genetic testing information
only in accordance with Sections 15 and Section 30 of this Act.
    (c) An employer, employment agency, labor organization,
and licensing agency shall not directly or indirectly do any of
the following:
        (1) solicit, request, require or purchase genetic
    testing or genetic information of a person or a family
    member of the person, or administer a genetic test to a
    person or a family member of the person as a condition of
    employment, preemployment application, labor organization
    membership, or licensure;
        (2) affect the terms, conditions, or privileges of
    employment, preemployment application, labor organization
    membership, or licensure, or terminate the employment,
    labor organization membership, or licensure of any person
    because of genetic testing or genetic information with
    respect to the employee or family member, or information
    about a request for or the receipt of genetic testing by
    such employee or family member of such employee;
        (3) limit, segregate, or classify employees in any way
    that would deprive or tend to deprive any employee of
    employment opportunities or otherwise adversely affect the
    status of the employee as an employee because of genetic
    testing or genetic information with respect to the employee
    or a family member, or information about a request for or
    the receipt of genetic testing or genetic information by
    such employee or family member of such employee; and
        (4) retaliate through discharge or in any other manner
    against any person alleging a violation of this Act or
    participating in any manner in a proceeding under this Act.
    (d) An agreement between a person and an employer,
prospective employer, employment agency, labor organization,
or licensing agency, or its employees, agents, or members
offering the person employment, labor organization membership,
licensure, or any pay or benefit in return for taking a genetic
test is prohibited.
    (e) An employer shall not use genetic information or
genetic testing in furtherance of a workplace wellness program
benefiting employees unless (1) health or genetic services are
offered by the employer, (2) the employee provides written and
informed consent in accordance with Section 30 of this Act, (3)
only the employee or family member if the family member is
receiving genetic services and the licensed health care
professional or licensed genetic counselor involved in
providing such services receive individually identifiable
information concerning the results of such services, and (4)
any individually identifiable information is only available
for purposes of such services and shall not be disclosed to the
employer except in aggregate terms that do not disclose the
identity of specific employees.
    (f) Nothing in this Act shall be construed to prohibit
genetic testing of an employee who requests a genetic test and
who provides written and informed consent, in accordance with
Section 30 of this Act, from taking a genetic test for the
purpose of initiating a workers' compensation claim under the
Workers' Compensation Act.
    (g) A purchase of commercially and publicly available
documents, including newspapers, magazines, periodicals, and
books but not including medical databases or court records or
inadvertently requesting family medical history by an
employer, employment agency, labor organization, and licensing
agency does not violate this Act.
    (h) Nothing in this Act shall be construed to prohibit an
employer that conducts DNA analysis for law enforcement
purposes as a forensic laboratory and that includes such
analysis in the Combined DNA Index System pursuant to the
federal Violent Crime Control and Law Enforcement Act of 1994
from requesting or requiring genetic testing or genetic
information of such employer's employees, but only to the
extent that such genetic testing or genetic information is used
for analysis of DNA identification markers for quality control
to detect sample contamination.
    (i) Nothing in this Act shall be construed to prohibit an
employer from requesting or requiring genetic information to be
used for genetic monitoring of the biological effects of toxic
substances in the workplace, but only if (1) the employer
provides written notice of the genetic monitoring to the
employee; (2) the employee provides written and informed
consent under Section 30 of this Act or the genetic monitoring
is required by federal or State law; (3) the employee is
informed of individual monitoring results; (4) the monitoring
is in compliance with any federal genetic monitoring
regulations or State genetic monitoring regulations under the
authority of the federal Occupational Safety and Health Act of
1970; and (5) the employer, excluding any licensed health care
professional or licensed genetic counselor that is involved in
the genetic monitoring program, receives the results of the
monitoring only in aggregate terms that do not disclose the
identity of specific employees.
    (j) Despite lawful acquisition of genetic testing or
genetic information under subsections (e) through (i) of this
Section, an employer, employment agency, labor organization,
and licensing agency still may not use or disclose the genetic
test or genetic information in violation of this Act.
    (k) Except as provided in subsections (e), (f), (h), and
(i) of this Section, a person shall not knowingly sell to or
interpret for an employer, employment agency, labor
organization, or licensing agency, or its employees, agents, or
members, a genetic test of an employee, labor organization
member, or license holder, or of a prospective employee,
member, or license holder.
(Source: P.A. 90-25, eff. 1-1-98.)
 
    (410 ILCS 513/40)
    Sec. 40. Right of action.
    (a) Any person aggrieved by a violation of this Act shall
have a right of action in a State the circuit court or as a
supplemental claim in a federal district court against an
offending party. A prevailing party and may recover for each
violation:
        (1) Against any party person who negligently violates a
    provision of this Act, liquidated damages of $2,500 $1,000
    or actual damages, whichever is greater.
        (2) Against any party person who intentionally or
    recklessly violates a provision of this Act, liquidated
    damages of $15,000 $5,000 or actual damages, whichever is
    greater.
        (3) Reasonable attorney's attorney fees and costs,
    including expert witness fees and other litigation
    expenses.
        (4) Such other relief, including an injunction, as the
    State or federal court may deem appropriate.
    (b) Article XL of the Illinois Insurance Code shall provide
the exclusive remedy for violations of Section 30 by insurers.
    (c) Notwithstanding any provisions of the law to the
contrary, any person alleging a violation of subsection (a) of
Section 15, subsection (b) of Section 25, Section 30, or
Section 35 of this Act shall have a right of action in a State
circuit court or as a supplemental claim in a federal district
court to seek a preliminary injunction preventing the release
or disclosure of genetic testing or genetic information pending
the final resolution of any action under this Act.
(Source: P.A. 90-25, eff. 1-1-98.)
 
    (410 ILCS 513/50 new)
    Sec. 50. Home rule. Any home rule unit of local
government, any non-home rule municipality, or any non-home
rule county within the unincorporated territory of the county
may enact ordinances, standards, rules, or regulations that
protect genetic information and genetic testing in a manner or
to an extent equal to or greater than the protection provided
in this Act. This Section is a limitation on the concurrent
exercise of home rule power under subsection (i) of Section 6
of Article VII of the Illinois Constitution.