Full Text of SB2399 95th General Assembly
SB2399enr 95TH GENERAL ASSEMBLY
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| AN ACT concerning health.
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| Be it enacted by the People of the State of Illinois,
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| represented in the General Assembly:
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| Section 5. The Genetic Information Privacy Act is amended | 5 |
| by changing Sections 10, 15, 25, and 40 and by adding Section | 6 |
| 50 as follows:
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| (410 ILCS 513/10)
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| Sec. 10. Definitions. As used in this Act:
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| "Employer" means the State of Illinois, any unit of local | 10 |
| government, and any board, commission, department, | 11 |
| institution, or school district, any party to a public | 12 |
| contract, any joint apprenticeship or training committee | 13 |
| within the State, and every other person employing employees | 14 |
| within the State. | 15 |
| "Employment agency" means both public and private | 16 |
| employment agencies and any person, labor organization, or | 17 |
| labor union having a hiring hall or hiring office regularly | 18 |
| undertaking, with or without compensation, to procure | 19 |
| opportunities to work, or to procure, recruit, refer, or place | 20 |
| employees. | 21 |
| "Family member" means, with respect to an individual, (i) | 22 |
| the spouse of the individual; (ii) a dependent child of the | 23 |
| individual, including a child who is born to or placed for |
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| adoption with the individual; (iii) any other person qualifying | 2 |
| as a covered dependent under a managed care plan; and (iv) all | 3 |
| other individuals related by blood or law to the individual or | 4 |
| the spouse or child described in subsections (i) through (iii) | 5 |
| of this definition. | 6 |
| "Genetic information" means, with respect to any | 7 |
| individual, information about (i) the individual's genetic | 8 |
| tests; (ii) the genetic tests of a family member of the | 9 |
| individual; and
(iii) the manifestation or possible | 10 |
| manifestation of a disease or disorder in a family member of | 11 |
| the individual. Genetic information does not include | 12 |
| information about the sex or age of any individual. | 13 |
| "Genetic monitoring" means the periodic examination of | 14 |
| employees to evaluate acquired modifications to their genetic | 15 |
| material, such as chromosomal damage or evidence of increased | 16 |
| occurrence of mutations that may have developed in the course | 17 |
| of employment due to exposure to toxic substances in the | 18 |
| workplace in order to identify, evaluate, and respond to | 19 |
| effects of or control adverse environmental exposures in the | 20 |
| workplace. | 21 |
| "Genetic services" means a genetic test, genetic | 22 |
| counseling, including obtaining, interpreting, or assessing | 23 |
| genetic information, or genetic education. | 24 |
| "Genetic testing" and "genetic test" mean means a test or | 25 |
| analysis of human a person's
genes, gene products, DNA, RNA, or | 26 |
| chromosomes , proteins, or metabolites that detect genotypes, |
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| mutations, chromosomal changes, for abnormalities , or | 2 |
| deficiencies,
including carrier status, that (i) are linked to | 3 |
| physical or mental disorders
or
impairments, (ii) indicate a | 4 |
| susceptibility to illness, disease, impairment,
or other | 5 |
| disorders, whether physical or mental, or (iii) demonstrate | 6 |
| genetic or
chromosomal damage due to environmental factors. | 7 |
| Genetic testing and genetic tests do does not
include routine | 8 |
| physical measurements; chemical, blood and urine analyses that
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| are widely accepted and in use in clinical practice; tests for | 10 |
| use of drugs;
and tests for the presence of the human | 11 |
| immunodeficiency virus ; analyses of proteins or metabolites | 12 |
| that do not detect genotypes, mutations, chromosomal changes, | 13 |
| abnormalities, or deficiencies; or analyses of proteins or | 14 |
| metabolites that are directly related to a manifested disease, | 15 |
| disorder, or pathological condition that could reasonably be | 16 |
| detected by a health care professional with appropriate | 17 |
| training and expertise in the field of medicine involved .
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| "Insurer" means (i) an entity that transacts an insurance | 19 |
| business and (ii) a
managed care plan.
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| "Licensing agency" means a board, commission, committee, | 21 |
| council, department, or officers, except a judicial officer, in | 22 |
| this State or any political subdivision authorized to grant, | 23 |
| deny, renew, revoke, suspend, annul, withdraw, or amend a | 24 |
| license or certificate of registration. | 25 |
| "Labor organization" includes any organization, labor | 26 |
| union, craft union, or any voluntary unincorporated |
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| association designed to further the cause of the rights of | 2 |
| union labor that is constituted for the purpose, in whole or in | 3 |
| part, of collective bargaining or of dealing with employers | 4 |
| concerning grievances, terms or conditions of employment, or | 5 |
| apprenticeships or applications for apprenticeships, or of | 6 |
| other mutual aid or protection in connection with employment, | 7 |
| including apprenticeships or applications for apprenticeships. | 8 |
| "Managed care plan" means a plan that establishes, | 9 |
| operates, or maintains a
network of health care providers that | 10 |
| have entered into agreements with the
plan to provide health | 11 |
| care services to enrollees where the plan has the
ultimate and | 12 |
| direct contractual obligation to the enrollee to arrange for | 13 |
| the
provision of or pay for services
through:
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| (1) organizational arrangements for ongoing quality | 15 |
| assurance,
utilization review programs, or dispute | 16 |
| resolution; or
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| (2) financial incentives for persons enrolled in the | 18 |
| plan to use the
participating providers and procedures | 19 |
| covered by the plan.
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| A managed care plan may be established or operated by any | 21 |
| entity including
a licensed insurance company, hospital or | 22 |
| medical service plan, health
maintenance organization, limited | 23 |
| health service organization, preferred
provider organization, | 24 |
| third party administrator, or an employer or employee
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| organization.
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| (Source: P.A. 90-25, eff. 1-1-98.)
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| (410 ILCS 513/15)
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| Sec. 15. Confidentiality of genetic information.
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| (a) Except as otherwise provided in this Act, genetic | 4 |
| testing and
information derived from genetic testing is | 5 |
| confidential and privileged and may
be released only to the | 6 |
| individual tested and to persons specifically
authorized, in | 7 |
| writing in accordance with Section 30, by that individual to
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| receive the information. Except as otherwise provided in | 9 |
| subsection (b) and in
Section 30, this information shall not be | 10 |
| admissible as evidence, nor
discoverable in any action
of any | 11 |
| kind in any court, or before any tribunal, board, agency, or | 12 |
| person
pursuant to Part 21 of Article VIII of the Code of Civil | 13 |
| Procedure. No
liability shall attach
to any hospital, | 14 |
| physician, or other health care provider for compliance with
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| the provisions of this Act including a specific written release | 16 |
| by the
individual in accordance with this Act.
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| (b) When a biological sample is legally obtained by a peace | 18 |
| officer for use
in a criminal investigation or prosecution,
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| information derived from genetic testing of that sample
may be | 20 |
| disclosed
for identification purposes
to appropriate law | 21 |
| enforcement authorities
conducting the
investigation or | 22 |
| prosecution
and may be used in accordance with Section 5-4-3 of | 23 |
| the Unified Code of
Corrections. The information may be used
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| for identification purposes
during the course of
the | 25 |
| investigation or prosecution with respect to the individual |
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| tested without
the consent of the individual and shall be | 2 |
| admissible as evidence in court.
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| The information shall be confidential and
may be
disclosed | 4 |
| only for purposes of criminal investigation or prosecution.
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| Genetic testing and genetic information derived thereof | 6 |
| shall be admissible as evidence and discoverable, subject to a | 7 |
| protective order, in any actions alleging a violation of this | 8 |
| Act, seeking to enforce Section 30 of this Act through the | 9 |
| Illinois Insurance Code, alleging discriminatory genetic | 10 |
| testing or use of genetic information under the Illinois Human | 11 |
| Rights Act or the Illinois Civil Rights Act of 2003, or | 12 |
| requesting a workers' compensation claim under the Workers' | 13 |
| Compensation Act. | 14 |
| (c) If the subject of the information requested by law | 15 |
| enforcement is found
innocent of the offense or otherwise not | 16 |
| criminally penalized, then the
court
records
shall be expunged | 17 |
| by the court within 30 days after the final legal proceeding.
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| The court shall notify the subject of the information of the | 19 |
| expungement of
the records in writing.
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| (d) Results of genetic testing that indicate that the | 21 |
| individual tested is
at the time of the test afflicted with a | 22 |
| disease, whether or not currently
symptomatic,
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| to the
confidentiality requirements of this Act.
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| (Source: P.A. 90-25, eff. 1-1-98.)
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| (410 ILCS 513/25)
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| Sec. 25. Use of genetic testing information by employers.
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| (a) An employer , employment agency, labor organization, | 3 |
| and licensing agency shall treat genetic testing and genetic | 4 |
| information in such a manner
that is consistent with the | 5 |
| requirements of federal law, including but not
limited to the | 6 |
| Genetic Information Nondiscrimination Act of 2008, the | 7 |
| Americans with Disabilities Act , Title VII of the Civil Rights | 8 |
| Act of 1964, the Family and Medical Leave Act of 1993, the | 9 |
| Occupational Safety and Health Act of 1970, the Federal Mine | 10 |
| Safety and Health Act of 1977, or the Atomic Energy Act of | 11 |
| 1954 .
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| (b) An employer may release genetic testing information | 13 |
| only in accordance
with Sections 15 and Section 30 of this Act .
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| (c) An employer, employment agency, labor organization, | 15 |
| and licensing agency shall not directly or indirectly do any of | 16 |
| the following: | 17 |
| (1) solicit, request, require or purchase genetic | 18 |
| testing or genetic information of a person or a family | 19 |
| member of the person, or administer a genetic test to a | 20 |
| person or a family member of the person as a condition of | 21 |
| employment, preemployment application, labor organization | 22 |
| membership, or licensure; | 23 |
| (2) affect the terms, conditions, or privileges of | 24 |
| employment, preemployment application, labor organization | 25 |
| membership, or licensure, or terminate the employment, | 26 |
| labor organization membership, or licensure of any person |
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| because of genetic testing or genetic information with | 2 |
| respect to the employee or family member, or information | 3 |
| about a request for or the receipt of genetic testing by | 4 |
| such employee or family member of such employee; | 5 |
| (3) limit, segregate, or classify employees in any way | 6 |
| that would deprive or tend to deprive any employee of | 7 |
| employment opportunities or otherwise adversely affect the | 8 |
| status of the employee as an employee because of genetic | 9 |
| testing or genetic information with respect to the employee | 10 |
| or a family member, or information about a request for or | 11 |
| the receipt of genetic testing or genetic information by | 12 |
| such employee or family member of such employee; and | 13 |
| (4) retaliate through discharge or in any other manner | 14 |
| against any person alleging a violation of this Act or | 15 |
| participating in any manner in a proceeding under this Act. | 16 |
| (d) An agreement between a person and an employer,
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| prospective employer, employment agency, labor organization,
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| or licensing agency, or its employees, agents, or members
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| offering the person employment, labor organization membership,
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| licensure, or any pay or benefit in return for taking a genetic
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| test is prohibited. | 22 |
| (e) An employer shall not use genetic information or
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| genetic testing in furtherance of a workplace wellness program
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| benefiting employees unless (1) health or genetic services are | 25 |
| offered by the employer, (2) the employee provides written and | 26 |
| informed consent in accordance with Section 30 of this Act, (3) |
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| only the employee or family member if the family member is | 2 |
| receiving genetic services and the licensed health care | 3 |
| professional or licensed genetic counselor involved in | 4 |
| providing such services receive individually identifiable | 5 |
| information concerning the results of such services, and (4) | 6 |
| any individually identifiable information is only available | 7 |
| for purposes of such services and shall not be disclosed to the | 8 |
| employer except in aggregate terms that do not disclose the | 9 |
| identity of specific employees. | 10 |
| (f) Nothing in this Act shall be construed to prohibit | 11 |
| genetic testing of an employee who requests a genetic test and
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| who provides written and informed consent, in accordance with
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| Section 30 of this Act, from taking a genetic test for the
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| purpose of initiating a workers' compensation
claim under the | 15 |
| Workers' Compensation Act. | 16 |
| (g) A purchase of commercially and publicly available
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| documents, including newspapers, magazines, periodicals, and
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| books but not including medical databases or court records or
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| inadvertently requesting family medical history by an
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| employer, employment agency, labor organization, and licensing
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| agency does not violate this Act. | 22 |
| (h) Nothing in this Act shall be construed to prohibit an | 23 |
| employer that conducts DNA analysis for law enforcement | 24 |
| purposes as a forensic laboratory and that includes such | 25 |
| analysis in the Combined DNA Index System pursuant to the | 26 |
| federal Violent Crime Control and Law Enforcement Act of 1994 |
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| from requesting or requiring genetic testing or genetic | 2 |
| information of such employer's employees, but only to the | 3 |
| extent that such genetic testing or genetic information is used | 4 |
| for analysis of DNA identification markers for quality control | 5 |
| to detect sample contamination. | 6 |
| (i) Nothing in this Act shall be construed to prohibit an | 7 |
| employer from requesting or requiring genetic information to be | 8 |
| used for genetic monitoring of the biological effects of toxic | 9 |
| substances in the workplace, but only if (1) the employer | 10 |
| provides written notice of the genetic monitoring to the | 11 |
| employee; (2) the employee provides written and informed | 12 |
| consent under Section 30 of this Act or the genetic monitoring | 13 |
| is required by federal or State law; (3) the employee is | 14 |
| informed of individual monitoring results; (4) the monitoring | 15 |
| is in compliance with any federal genetic monitoring | 16 |
| regulations or State genetic monitoring regulations under the | 17 |
| authority of the federal Occupational Safety and Health Act of | 18 |
| 1970; and (5) the employer, excluding any licensed health care | 19 |
| professional or licensed genetic counselor that is involved in | 20 |
| the genetic monitoring program, receives the results of the | 21 |
| monitoring only in aggregate terms that do not disclose the | 22 |
| identity of specific employees. | 23 |
| (j) Despite lawful acquisition of genetic testing or | 24 |
| genetic information under subsections (e) through (i) of this | 25 |
| Section, an employer, employment agency, labor organization, | 26 |
| and licensing agency still may not use or disclose the genetic |
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| test or genetic information in violation of this Act. | 2 |
| (k) Except as provided in subsections (e), (f), (h), and | 3 |
| (i) of this Section, a person shall not knowingly sell to or | 4 |
| interpret for an employer, employment agency, labor | 5 |
| organization, or licensing agency, or its employees, agents, or | 6 |
| members, a genetic test of an employee, labor organization | 7 |
| member, or license holder, or of a prospective employee, | 8 |
| member, or license holder. | 9 |
| (Source: P.A. 90-25, eff. 1-1-98.)
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| (410 ILCS 513/40)
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| Sec. 40. Right of action.
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| (a) Any person aggrieved by a violation of this
Act
shall | 13 |
| have a right of action in a State the
circuit court or as a | 14 |
| supplemental claim in a federal district court against an | 15 |
| offending party. A prevailing party and may recover for each | 16 |
| violation:
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| (1) Against any party person who negligently violates a | 18 |
| provision of this Act,
liquidated damages of $2,500 $1,000 | 19 |
| or
actual damages, whichever is greater.
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| (2) Against any party person who intentionally or | 21 |
| recklessly violates a
provision of this Act, liquidated
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| damages of $15,000 $5,000 or actual damages, whichever is | 23 |
| greater.
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| (3) Reasonable attorney's attorney fees and costs, | 25 |
| including expert witness fees and other litigation |
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| expenses .
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| (4) Such other relief, including an injunction, as the | 3 |
| State or federal court may deem
appropriate.
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| (b) Article XL of the Illinois Insurance Code shall provide | 5 |
| the exclusive
remedy for violations of Section 30 by insurers.
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| (c) Notwithstanding any provisions of the law to the
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| contrary, any person alleging a violation of subsection (a) of | 8 |
| Section 15, subsection (b)
of Section 25, Section 30, or | 9 |
| Section 35 of this Act shall have a right of action in a
State | 10 |
| circuit court or as a supplemental claim in a federal
district | 11 |
| court to seek a preliminary injunction preventing the
release | 12 |
| or disclosure of genetic testing or genetic information
pending | 13 |
| the final resolution of any action under this Act. | 14 |
| (Source: P.A. 90-25, eff. 1-1-98.)
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| (410 ILCS 513/50 new)
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| Sec. 50. Home rule. Any home rule unit of local | 17 |
| government, any non-home rule municipality, or any non-home | 18 |
| rule county within the unincorporated territory of the county | 19 |
| may enact ordinances, standards, rules, or regulations that | 20 |
| protect genetic information and genetic testing in a manner or | 21 |
| to an extent equal to or greater than the protection provided | 22 |
| in this Act. This Section is a limitation on the concurrent | 23 |
| exercise of home rule power under subsection (i) of Section 6 | 24 |
| of Article VII of the Illinois Constitution.
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