Genome Statute and Legislation Database

An employer may not (1) access or otherwise take into account private genetic information, (2) request or require consent to a release of private genetic information, (3) request or require a genetic test, or (4) inquire about taking or refusal to take a genetic test in connection with a hiring, promotion, retention or other related decision. An exception is made under certain circumstances for an order compelling disclosure of private genetic information.

With respect to disability insurance or any health benefit plan, no person may discriminate on the basis of a genetic test or private genetic information in the issuance of coverage or the fixing of rates, terms or conditions.

General managed care plans and health benefit plans covering large and small employers may not treat genetic information in the absence of a diagnosis as a pre-existing condition.

If a firefighter is diagnosed with breast cancer after five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present.

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.

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden.

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.

The state health department must develop a system for using, for epidemiological survey and research purposes, any waste blood specimen left over after newborn screening. Waste blood specimens used for the purpose of epidemiological survey may not include the name or other identifying characteristics that would identify the individual submitting the specimen.

An insurer (except a life insurance company) may not obtain genetic screening or testing results without a separate written consent from an individual, but these entities are not liable for inadvertent receipt of results without consent.

Every accident and sickness policy, contract through which an HMO furnishes health care, government self-insured health care plan, and employee welfare benefit plan may not (1) require a genetic screening or testing; (2) consider screening or testing information in a manner adverse to member, applicant or their family members; (3) inquire about genetic screening or test results, use or base a decision on such information to cancel, refuse to issue, renew or enter into a contract, limit benefits, or charge higher premiums under health care services coverage; or (4) make an adverse decision about applicants or their family based genetic testing or screening results in medical records or other reports. An insurer may consider voluntarily submitted genetic test results if they are favorable. A violation of the law is an unfair method of competition deceptive act and practice in the business of insurance.

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.

A health carrier to notify a covered person of the right to request an external review and include appropriate statements and information in the written notice of a final adverse decision. Health carriers also must include with the notice an authorization form or other document developed by the state that complies with the federal Genetic Information Nondiscrimination Act.

An employer, employment agency, labor organization, licensing agency, or its employees, agents, or members may not solicit, require or administer a genetic test as a condition of employment, application, membership or licensure or affect the terms, conditions, or privileges of employment, application, membership, or licensure, of a person who obtains a genetic test. A person may not sell or interpret genetic tests for the above entities except with informed written consent for the purpose of workers compensation or biomonitoring of workplace toxins. Agreements between parties regarding pay or benefit for taking a genetic test are prohibited. The law may be enforced through civil action.

The statutes restrict the use of genetic tests, information about whether an individual or family member has obtained a genetic test, and test results by a health insurance company, health maintenance organization, nonprofit medical and hospital, dental, optometric or pharmacy corporation, or a group subject to K.S.A. 12-2616 et seq. offering group policies and certificates of coverage or individual policies providing hospital, medical or surgical expense benefits. These entities may not require any individual, as a condition of enrollment or continued enrollment, higher premiums or contributions or than a similarly situated individual based on a genetic test or adjust premium or contribution amounts based on a genetic test. An accident or sickness insurer may not deny coverage based on a health status-related factors, including genetic information, and group policies providing hospital, medical or surgical expense benefits may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. The use of such information by an insurer writing life insurance, disability income insurance or long-term care insurance coverage also is restricted unless it is for the purpose of writing life insurance coverage. Life, disability income or long-term care insurers also may not provide for rates or any other aspect of coverage that is not reasonably related to the risk involved.

An employer may not (1) seek to obtain, obtain or use genetic screening or testing information of an employee or a prospective employee to discriminate against an employee or a prospective employee or (2) subject any employee or prospective employee to any genetic screening or test.

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing.

Individual or group health benefit plan or insurers may not (1) deny, cancel, or refuse to renew the benefits or coverage, or vary the premiums, terms, or conditions for the benefits or coverage, for any participant or beneficiary based on a genetic test for which symptoms have not manifested or a request or receipt of genetic services or (2) disclose any genetic test without prior authorization for each disclosure. A group or individual health benefit plan or insurer or a disability income insurer may not request or require the disclosure of any genetic test about a participant or beneficiary without prior written authorization for each disclosure.

An insurer that offers health benefit plan coverage in the small group, large group, or association market may not establish rules for eligibility based on health status-related factors, including genetic information. Health insurers offering individual health benefit plan coverage may not impose a pre-existing conditions exclusion based on genetic information in the absence of a diagnosis.

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network.

Public agencies and nonaffiliated third parties must implement, maintain, and update security procedures and practices to safeguard personal information, including a biometric or genetic print.

The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth.

Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations.

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for the treatment of a metastatic or unresectable tumor with a medically necessary drug on the sole basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status.