Genome Statute and Legislation Database

An employer, employment agency, or licensing agency may not (1) request, require or administer a genetic test, (2) affect the terms, conditions, or privileges of or terminate employment or licensure of any person who obtains a genetic test, (3) take any other action affecting the terms, conditions or privileges of employment against an employee or a license holder based on the results of a genetic test or the refusal to take a genetic test, submit family history, or reveal whether the employee, applicant or holder has taken a genetic test, (4) otherwise use genetic information to adversely affect the employment, licensure, or application for employment or licensure of any individual, or (5) reveal genetic information about employees, licensees, or applicants. Penalties for violations are set forth.

Genetic information is the property of the individual to whom it pertains. Release of genetic information that identifies the person tested for purposes other than diagnosis, treatment and therapy requires specific written consent. Exemptions under the law include some uses by research facilities. researchers may use genetic testing information for scientific research as long as the identity of any individual to whom the information pertains is not disclosed to any third party except that the individuals identity may be disclosed to the individuals physician with written consent. Group disability or long-term care insurers that receive genetic information may not seek, use or keep the information for any non-therapeutic or underwriting purpose. Life insurers and individual disability insurers may not perform a genetic test without informed consent. Penalties are set forth for unfair trade practices with respect to group disability and long-term care insurance.

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Not effective until 10/1/2024.

Directs the director of the office of information technology services to conduct a study on the use of biometric identifying technology. Prohibits the use of biometric identifying technology in schools until July 1, 2022 or until the commissioner of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence.

The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law.

Accountable health plans may not (1) deny, limit or condition coverage or benefits based on health status-related factors, including genetic information or (2) impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

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.

Health insurers may not discriminate based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. A carrier or organized delivery system offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based on a health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Any hospital, medical, or surgical expense-incurred policy or certificate and self-funded employee benefit plan to the extent not preempted by federal law may not require a covered person or his or her dependent or an asymptomatic applicant for coverage or his or her asymptomatic dependent to undergo any genetic test before issuing, renewing, or continuing the policy or certificate. This does prohibit requiring an applicant for coverage to answer questions concerning family history.

An insurance provider may not deny or cancel health_insurance_coverage or vary the premiums, terms, or conditions for health_insurance_coverage for an individual or his or her family member on the basis of a request or receipt of genetic services. An insurer may not request or require an individual to whom it provides health_insurance_coverage or an applicant to disclose to the insurer genetic information about the individual or family member of the individual. Life insurance, disability income, long-term care, accident only, hospital indemnity or fixed indemnity, dental or vision policies are exempt from the law.