Genome Statute and Legislation Database

Employers or employment agencies may not administer a genetic test or request, require, or collect protected genetic information as a condition of employment or affect the terms or conditions of employment or terminate the employment of any person based on protected genetic information. A person may not provide or interpret genetic information on a current or prospective employee for an employer or employment agency. An aggrieved person may bring a civil action.

Every individual or group hospital or medical insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state shall pay for two (2) screening mammograms per year when recommended by a physician for women who have been treated for breast cancer within the last five (5) years or are at high risk of developing breast cancer due to genetic predisposition (BRCA gene mutation or multiple first degree relatives) or high risk lesion on prior biopsy (lobular carcinoma in situ) or atypical ductal hyperplasia.

Provides for the protection of human subjects participating in medical experiments. Enacts the Experimental Subject's Bill of Rights, which details informed consent requirements.

An employer may not fail or refuse to hire, discharge or otherwise discriminate against an employee or applicant for employment because of the individual's refusal to submit to a genetic test or refusal to provide the results of a genetic test, or based on the receipt of a genetic test or genetic counseling, except when based on a bona fide occupational qualification. The Maine Human Rights Commission has authority to enforce this provision.

No person may discriminate against an individual based on genetic information or the refusal of a genetic test with respect to hospital confinement or other supplemental limited benefit insurance. No person may make or permit any unfair discrimination against an individual in the application of the results of a genetic test or genetic information with respect to life insurance, including credit life insurance, an annuity, disability income insurance contract or credit accident insurance coverage, and, if results of a genetic test as permitted by these entities, the insurer must notify the individual who is the subject of the test that it is required and obtain the individual's prior written informed consent. The insurance commissioner has the authority to enforce these provisions.

Prohibits health insurers, health maintenance organizations, nonprofit health insurance plan or any person or organization that provides health benefits plans from excluding or limiting certain benefits or denying certain coverage based on a health-status related factor, including genetic information. Health status-related factors also may not be used to (1) cancel or refuse to renew a small employer group plan or individual health plans; (2) establish rules for eligibility; or (3) charge higher premiums than similarly situated individuals in a group health plan.

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work.

An insurer offering group health_insurance_coverage may not use genetic information as the basis for a pre-existing condition exclusion in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on health status-related factors, including genetic information. An insurer with respect to a self-insured health plan, or a county, city, village or school board that provides health care services for individuals on a self-insured basis, may not (1) require or request any individual or a member of the individual's family obtain a genetic test or reveal whether a test was taken or the results or (2) condition coverage or health care benefits on or use in the determination of rates whether an individual or his/her family member has taken a genetic test or what the results of the test were. Life insurance or income continuance insurers are not subject to the above provisions but may not provide rates or aspects of coverage that are contrary to the risk involved.

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

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 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.

A group health plan or a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information. A group health plan or a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility of any individual to enroll under the terms of the group health plan based on health status-related factors, including genetic information.

Schools must obtain written informed consent from a parent, legal guardian, or student, if the student is 18 years of age or older, before the collection of individual student biometric data, including DNA. The law also establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools.

Genetic information the property of the individual, and written consent is required for its disclosure other than for diagnosis, treatment or therapy. Health care entities may not retain or use genetic information for non-therapeutic purposes or request or require a genetic test; however, test results may be used on a limited basis to make payment decisions. Exceptions under the law include the use of genetic information for scientific research if the identity of the individual to whom the genetic information pertains is not disclosed to a third party other than the individuals physician with written consent. The law provides remedies for individuals whose rights are violated.

Discrimination is prohibited in the issuance, denial or renewal of or in the fixing of the rates, terms or conditions for health insurance, excluding disability or long-term care insurance. The law provides for a cause of action in the nature of defamation, invasion of privacy or negligence with some exceptions.

The statute requires the health department to develop a schedule for the retention and disposal of blood specimens. The schedule must allow for the blood specimens to be used for medical research during the established retention period, as long as the medical research is conducted in a manner that preserves the confidentiality of the test subjects and is consistent to protect human subjects from research risks under subpart A of part 46 of subchapter A of title 45 of the code of federal regulations.

Health benefit plans covering small employers and group policies of hospital and medical insurance may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health status-related factor is defined to include genetic information in the chapter of the law pertaining to small employer employee health insurance.

Prohibits the sale of a gene therapy kit unless the seller includes a notice on the seller�s internet website to the consumer prior to the point of sale and on a label on the package stating that the kit is not for self-administration.

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.

It is an unlawful employment practice for an employer, a labor organization or an employment agency to (1) ask or encourage a prospective or current employee or member of the labor organization to submit to a genetic test, (2) require or administer a genetic test to a person as a condition of employment or membership, or (3) deny, alter the terms, conditions or privileges of, or terminate employment or membership based on genetic information.

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21.

A person may not (1) obtain genetic information from an individual or from an individual's DNA sample or (2) retain an individuals genetic information without prior informed consent with some exceptions, including for anonymous research where the identity of the subject will not be released. A DNA sample from an individual who is the subject of a research project must be destroyed promptly upon completion of the project or withdrawal of the individual from the project unless consent to retain the sample is provided. Additional provisions address retention and disclosure. The statutes set forth civil and criminal penalties for violations.

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information.

Informed consent is required to perform DNA analysis. The results of DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without express consent. A person who performs DNA analysis or receives records, results, or findings of DNA analysis must provide the person tested with notice that the analysis was performed or that the information was received.

An issuer of a Medicare supplement policies or certificates may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. These entities also may not discriminate with respect to pricing on the basis of genetic information; request or require an individual or family member to undergo a genetic test; or use the manifestation of disease in an individual as genetic information about another group member and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met.