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U.S. National Institutes of Health
Last Updated: 03/05/10

Appendix A

Summary of State Laws

This summary of state laws does not include full citations for statutes that prohibit discrimination in employment or insurance on the basis of genetic testing or genetic information. There are other comprehensive collections of state laws addressing genetic nondiscrimination in employment and insurance. Therefore, there are complete references only where the statute is relevant for the conduct of research using tissue specimens.


Confidentiality of Health Information

  • Medical records and medical information kept by hospitals must be protected and kept confidential [Illinois Compiled Statutes Annotated, Chapter 210 85/6.17].
  • The Illinois’ Medical Patient Rights Act establishes a right to privacy and confidentiality in health care and restricts the disclosure of medical information maintained by physicians, hospitals, and insurers unless individual patient authorization is obtained. [Illinois Compiled Statutes Annotated, Chapter 410, 50/3(d)]

Conditions Imposed on Genetic Testing/Use of Genetic information

The Illinois “Genetic Information Privacy Act” requires that the results of genetic tests be kept confidential, and the fact that an individual has undergone genetic testing be kept confidential. Employers and insurers may not use genetic information appropriately and may not release it except under certain specified conditions. Confidential information may be released only to the individual tested and to persons specifically authorized in writing by that individual to receive the information. [Illinois Compiled Statutes Annotated, Chapter 410, 513/15-30]

Permitted Releases of Health Information or Genetic Information for Research


Definition of Genetic Test/Genetic Information

“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. [Illinois Compiled Statutes Annotated Chapter 410 513/10]

Patients’ Rights Act (Experimental Procedures)

Illinois has passed a patients’ rights act requiring certain minimal rights for patients. Patient is defined as “any person who has received or is receiving medical care, treatment, or services from an individual or institution licensed to provide medical care or treatment in this State.” [Illinois Compiled Statutes Annotated 410 50/2.01]

“Any patient who is the subject of a research program or an experimental procedure, as defined under the rules and regulations of the Hospital Licensing Act, shall have, at a minimum, the right to receive an explanation of the nature and possible consequences of such research or experiment before the research or experiment is conducted, and to consent to or reject it. No physician may conduct any research program or experimental procedure on a patient without the prior informed consent of the patient or, if the patient is unable to consent, the patient’s guardian, spouse, parent, or authorized agent. The Act does not apply to research programs or medical experimental procedure for patients subject to a life-threatening emergency that is conducted in accordance with Part 50 of Title 21 of, and Part 46 of Title 45 of, the Code of Federal Regulations.” [Illinois Compiled Statutes Annotated 410 50/3.1]