(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 |
|
|
(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.
|
|
(Source: P.A. 90‑25, eff. 1‑1‑98.)
|
(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 |
|
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 513/30)
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 |
|
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.
(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 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.
(Source: P.A. 90‑25, eff. 1‑1‑98.)
|