2005 Illinois Code - Chapter 410 Public Health 410 ILCS 513/ Genetic Information Privacy Act.
(410 ILCS 513/1)
Sec. 1.
Short title.
This Act may be cited as the Genetic Information Privacy Act.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/5)
Sec. 5.
Legislative findings; intent.
The General Assembly finds that:
(1) The use of genetic testing can be valuable to an |
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(2) Despite existing laws, regulations, and
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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.
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(3) The public health will be served by facilitating
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voluntary and confidential nondiscriminatory use of genetic testing information.
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(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/10)
Sec. 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 |
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assurance, utilization review programs, or dispute resolution; or
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(2) financial incentives for persons enrolled in the
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plan to use the participating providers and procedures covered by the plan.
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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.)
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(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.
(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.)
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(410 ILCS 513/20)
Sec. 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, regardless of the source of that information, 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.
(Source: P.A. 92‑430, eff. 8‑17‑01.)
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(410 ILCS 513/22)
Sec. 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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/25)
Sec. 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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/30)
Sec. 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 |
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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.
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(2) Any person designated in a specific written
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legally effective release of the test results executed by the subject of the test or the subject's legally authorized representative.
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(3) An authorized agent or employee of a health
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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.
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(4) A health facility or health care provider that
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procures, processes, distributes, or uses:
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(A) a human body part from a deceased person
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with respect to medical information regarding that person; or
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(B) semen provided prior to the effective date
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of this Act for the purpose of artificial insemination.
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(5) Health facility staff committees for the
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purposes of conducting program monitoring, program evaluation, or service reviews.
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(6) In the case of a minor under 18 years of age,
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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.
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(7) All information and records held by a State
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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:
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(A) when made with the written consent of all
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persons to whom the information pertains;
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(B) when authorized by Section 5‑4‑3 of the
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Unified Code of Corrections;
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(C) when made for the sole purpose of
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implementing the Phenylketonuria Testing Act and rules; or
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(D) when made under the authorization of the
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Illinois Parentage Act of 1984.
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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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/35)
Sec. 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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(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 the
circuit court and may recover for each violation:
(1) Against any person who negligently violates a |
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provision of this Act, liquidated damages of $1,000 or actual damages, whichever is greater.
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(2) Against any person who intentionally or
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recklessly violates a provision of this Act, liquidated damages of $5,000 or actual damages, whichever is greater.
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(3) Reasonable attorney fees.
(4) Such other relief, including an injunction, as
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the court may deem appropriate.
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(b) Article XL of the Illinois Insurance Code shall provide the exclusive
remedy for violations of Section 30 by insurers.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/45)
Sec. 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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/91)
Sec. 91.
(Amendatory provisions; text omitted).
(Source: P.A. 90‑25, eff. 1‑1‑98; text omitted.)
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(410 ILCS 513/93)
Sec. 93.
(Amendatory provisions; text omitted).
(Source: P.A. 90‑25, eff. 1‑1‑98.)
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(410 ILCS 513/95)
Sec. 95.
(Amendatory provisions; text omitted).
(Source: P.A. 90‑25, eff. 1‑1‑98; text omitted.)
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(410 ILCS 513/97)
Sec. 97.
(Amendatory provisions; text omitted).
(Source: P.A. 90‑25, eff. 1‑1‑98; text omitted.)
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