Additional Resources

Creates the Consumer Privacy Act. Personal information is defined to include biometric information such as deoxyribonucleic acid. Provides consumers rights with regard to the collection and use of personal information businesses. 5/21/20 Added Co-Sponsor Rep. Martin J. Moylan. Bill Status: Pending

Amends the Genetic Information Privacy Act. Requires informed consent for a person or business to disclose an individual's genetic information to third parties specifically for marketing, advertising, or sales purposes. 5/15/20 Rule 2-10 Committee/3rd Reading Deadline Established As May 31, 2020. Bill Status: Pending

Individual and group health insurers, health maintenance organizations and the Illinois Department of Healthcare and Family Services (for eligible individuals) must provide coverage for a mammogram and a screening MRI at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. Coverage for a comprehensive ultrasound screening of an entire breast or breasts also is required if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if the woman is at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's health care provider.

An insurer must comply with the provisions of the Genetic Information Privacy Act in connection with the amendment, delivery, issuance, or renewal of, or claims for or denial of coverage under, an individual or group policy of accident and health insurance. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis of the condition under the Illinois Health Insurance Portability and Accountability Act.

A group health plan and a health insurance issuer offering group health insurance coverage may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

Genetic information may only be released to the individual tested and to other authorized persons with a few exceptions. An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance, and an insurer that receives this information may not use it for non-therapeutic purposes unless the favorable results of a genetic test are voluntarily submitted. An employer, employment agency, labor organization, and licensing agency must treat genetic testing and genetic information in a manner that is consistent with federal law, including but not limited to the Genetic Information Nondiscrimination Act of 2008. Prohibited actions by employers, employment agencies and labor organizations are specified. No person may 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 with some exceptions. A company providing direct-to-consumer genetic testing must obtain consent from the individual tested to share genetic information with any health or life insurance company.

Amends the state's newborn screening statute. The bill requires consent to release newborn's residual blood specimen for epidemiological survey and research. Died. Bill Status: Died

Establishes requirements regarding student education records, personally identifiable information of a student, and certain other information concerning a student. Personally identifiable information includes a DNA sequence. Died. Bill Status: Died

An insurer that issues an individual or group policy of accident and sickness insurance, small employer group health insurance plans, and health maintenance organization contracts may not establish rules for eligibility of an individual to enroll or continued enrollment based on any of the following health status related factors, including genetic information. Died. Bill Status: Died

The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor. Bill Status: Enacted