LAWS ON GENETIC PRIVACY ISSUES>
[Last Revised 6 Aug 2003] Many of the privacy laws are directed toward the release of genetic information by testing labs and companies, not toward a project manager of a surname DNA project.
513/10. Definitions [legal cite is "410 ILCS 513/10" (Illinois Compiled Statutes)]
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.
513/15. Confidentiality of genetic information
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.
[Subsections (b) and (c) are not set out here. They deal with criminal investigations.
(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.
513/30. Disclosure of person tested and test results
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 artifical 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. [FN1] 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 [FN2] 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;[FN3]
(C) when made for the sole purpose of implementing the Phenylketonuria Testing Act [FN4] and rules; or
(D) when made under the authorization of the Illinois Parentage Act of 1984. [FN5]
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 [FN6] shall be deemed compliance with this Section.
[FN1] 5 ILCS 140/1 et seq.
[FN2] 735 ILCS 5/8-101.
[FN3] 730 ILCS 5/5-4-3.
[FN4] 410 ILCS 240/0.01 et seq.
[FN5] 750 ILCS 45/1 et seq.
[FN6] 215 ILCS 5/40.
513/35. Disclosure by person to whom results have been disclosed
Section 35. Disclosure by person to whom results have been disclosed
No person to whom the results have been disclosed may disclose the test results to another person except as authorized by Section 30.
513/40. Right of action
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 [FN1] shall provide the exclusive remedy for violations of Section 30 by insurers.
[FN1] 215 ILCS 5/40.
Section 40 concerning damages or other relief is not set out here.
Genetically defective: The judicial interpretation of the Americans with Disabilities Act fails to protect against genetic discrimination in the workplace. 35 J.Marshall L.Rev. 457 (Spring 2002).
Are you my parent? Are you my child? The role of genetics and race in defining relationships after reproductive technological mistakes. Raizel Liebler, 5 DePaul J.Health Care L. 15 (Summer 2002).
Whose genetic information is it anyway? A legal analysis of the effects that mapping the human genome will have on privacy rights and genetic discrimination. 19 J.Marshall J.Computer & Info.L. 609 (Summer 2001).
Genes, dreams, and reality. The promise and risks of the new genetics. 83 Judicature 105 (1999).
The human genome project and the courts: Gene therapy and beyond. Maxwell J. Mehlman, 83 Judicature 124 (1999).
Genetic Testing Labs -- Not for medical disease testing
Short Tandem Repeat (STR) Analysis
Medical Genetics and Genealogy: Genetic Diseases
Genetics and Human Migration Patterns
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