Genome Statute and Legislation Database

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

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.

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information.

Health carriers may not establish rules of eligibility or continued eligibility for health coverage based on health status related factors of any employee or dependent, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Requires informed consent to conduct human research. Requires institutions or agencies conducting or proposing to conduct or authorize human research to establish a human research review committee.

An insurer that offers a group health insurance policy may not establish rules for eligibility or continued eligibility based on certain health status-related factors, including genetic information or use genetic information in the absence of a diagnosis as the basis for a pre-existing condition exclusion.

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of �13.386 of the statutes pertaining to genetic privacy.

Group accident and sickness policies may not treat genetic information as a pre-existing condition or base eligibility or continued eligibility of any individual on health-status-related factors, including genetic information.

All testing results and personal information from hereditary disorders programs obtained from any individual, or from specimens from any individual, is confidential and is considered a confidential medical record except for information that the individual, parent, or guardian consents to be released, provided after being fully informed of the scope of the information requested to be released, of all of the risks, benefits, and purposes for the release, and of the identity of those to whom the information will be released or made available, except for data compiled without reference to the identity of any individual, and except for research purposes, provided that pursuant to the Common Rule The research must first be reviewed and approved by an IRB. The health department, any entities approved by the department, and researchers must maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and (4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes.

The law requires breast cancer screening with mammography annually for persons with a predisposition to breast cancer.

An insurer, nonprofit health service plan, or health maintenance organization, which does not include life insurance policies, annuity contracts, long-term care insurance policies, or disability insurance policies, may not (1) use a genetic test, the results of a genetic test, genetic information, or a request for genetic services to affect a health insurance policy or contract, (2) request or require a genetic test, the results of a genetic test, or genetic information for certain purposes, or (3) release identifiable genetic information or the results of a genetic test except for internal business and to a participating health care provider without prior written authorization. Disclosure of identifiable genetic information to an employee or authorized health care provider may only be for the purpose of providing medical care to patients or conducting research approved by an institutional review board established in accordance with federal law. The insurance commissioner has the authority to issue orders where a violation is found.

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

An employer, labor organization or employment or licensing agency may not (1) solicit, require or administer a genetic test to any person as a condition of employment, labor organization membership or licensure or affect the terms, conditions or privileges of employment, labor organization membership or licensure; (2) terminate the employment, labor organization membership or licensure of any person who obtains a genetic test; or (3) require or administer a genetic test without the prior written and informed consent of the employee, labor organization member or licensee, or of the prospective employee, labor organization member or licensee, who is the subject of the test. No person may disclose to an employer, labor organization, employment agency or licensing agency that an employee, labor organization member or licensee, or a prospective employee, labor organization member or licensee, has taken a genetic test, and no person may disclose the results of such a test to an employer, labor organization, employment agency or licensing agency without the prior written and informed consent of the subject of the test.

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

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.

An insurer, health service corporation, health maintenance organization, fraternal benefit society, or other issuer of an individual or group policy or certificate of insurance may not discriminate based on a persons genetic traits. These entities also may not underwrite or condition coverage on a requirement or agreement to take a genetic test or on genetic information of an individual or his or her family member, and they may not seek genetic information for a purpose that is unrelated to assessing or managing ones health, inappropriate in an asymptomatic individual, or unrelated to research in which a subject is not personally identifiable. These entities may not require an individual to obtain a genetic test also with some exceptions. The law does not apply to life, disability income or long-term care insurance.

An employer may not to seek to obtain, obtain, or use genetic information of a current or prospective employee discriminate or restrict any right or benefit otherwise due or available to an employee or a prospective employee. A few exceptions are provided such as if the employer uses the test results for the limited purpose of taking disciplinary action against the employee based only on alleged misconduct. Any employee or prospective employee claiming to be aggrieved by an unlawful employment practice may bring a civil suit.

genetic_discrimination with regard to apprenticeship agreements is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information.

Enacts the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to:
(1) provide a consumer clear information regarding the company's collection, use, and disclosure of genetic data;
(2) provide a consumer a publicly available privacy notice; (3) obtain a consumer's consent for certain collection, use, or disclosure of the consumer's genetic data; (4) protect a consumer's genetic data; (5) allow a consumer to access and delete the consumer's genetic data; and (6) upon request, destroy a consumer's biological sample. Prohibits a direct-to-consumer genetic testing company from disclosing a consumer's genetic data to certain persons.

Informed consent is required to obtain or retain genetic information about an individual. Exemptions include anonymous research where the identity of the subject will not be released. A sample from which genetic information has been obtained must be promptly destroyed with certain exceptions, including retention for anonymous research. An individual may inspect, request correction of and obtain genetic information from the records of that individual. The law sets forth civil penalties for violations.

Genetic information contained in reports or records held by hospitals, laboratories, physicians, insurance institutions and others named in the statute may not be divulged without informed written consent with some exceptions, which include in connection with life, disability, and long term care insurance, as allowable, or as confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Additional provisions concerning the performance of genetic tests apply to laboratories and other facilities. Organizations conducting pharmoco-economic studies in systematic research to determine the cost benefits of specific treatment for genetic based disease are exempt from the need to re-obtain informed consent. A person whose rights have been violated may bring a civil action.

A person that conducts research on blood spots, other specimens, or registry data maintained by the health department must follow IRB processes for human subjects research, including obtaining parent or guardian authorization.

Preexisting condition exclusions may not be based on genetic information in the absence of a diagnosis. Insurers issuing group health plans may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

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.

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