Genome Statute and Legislation Database

Under the Small Employer Health Insurance Availability Act, health status-related factor is defined to include genetic information and pre-existing condition is defined to exclude genetic information in the absence of a diagnosis.

Pre-existing conditions and health status-related factors are defined to include genetic information with respect to multiple-employer welfare arrangements and the health insurance portability and accountability act.

An insurance institution, agent or insurance support organization that collects, uses or discloses medical record information must have written policies, standards and procedures for the management, transfer and security of medical record information, including additional protection against unauthorized disclosure of sensitive health information such as information regarding genetic testing and the fact that an individual has undergone a genetic test.

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164.

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

For purposes of distinguishing between or discriminating against or restricting any right or benefit otherwise due or available to an employee or prospective employee other than in connection with the determination of insurance coverage or benefits an employer may not (1) seek to obtain or use a genetic test or genetic information of the employee or the prospective employee, or (2) require a genetic test of or require genetic information from the employee or prospective employee.

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research.

A carrier that issues individual or group hospital, health or dental insurance and the Dirigo Health Self-administered Plan may not discriminate against an individual or eligible dependent on the basis of genetic information, the refusal to submit to a genetic test, refusal to make available the results of a genetic test, or based on the receipt of a genetic test or genetic counseling. A carrier may request, but not require, that an individual undergo a genetic test if the request is made pursuant to research that complies with the Common Rule and other specified criteria are met. Life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurers or an annuity may not (1) discriminate unfairly, which includes the use of genetic test results in a manner that is not reasonably related to anticipated claims experience, or (2) request, require, purchase or use information obtained from a direct-to-consumer genetic test without consent of the individual tested.

No employer, labor organization, employment agency, or licensing agency may (1) solicit, require or administer genetic testing, or (2) affect the terms, conditions, or privileges of, or terminate employment, membership, or licensure based on genetic testing. A person may not sell or provide to these entities any genetic testing relating to an existing or prospective employee, member or licensee unless for the purpose of workers compensation or biomonitoring of workplace toxins and with informed consent. The statutes establish a right to civil action by aggrieved individuals.

Employers or labor organizations may not use information about genetic testing, genetic counseling, or genetic disease for purposes specified. Civil and criminal penalties are set forth for violations.