Genome Statute and Legislation Database
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.
State | Primary Link | Topic(s) | Bill Status Sort descending | Summary |
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Delaware | State StatuteDelaware: Del. Code 16 1201 et seq. | Privacy, Research | Statute | 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. |
Massachusetts | State StatuteMassachusetts: MGL Public Health 111 70G | Other Lines of Insurance Nondiscrimination, Privacy, Research | Statute | 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. |
North Dakota | State StatuteNorth Dakota: NDCC 25-17-07 | Use of Residual Newborn Screening Specimens | Statute | 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. |
California | State StatuteCalifornia: Cal. Health and Safety Code 24170 et seq. | Research | Statute | Provides for the protection of human subjects participating in medical experiments. Enacts the Experimental Subject's Bill of Rights, which details informed consent requirements. |
Maine | State StatuteMaine: MRS 5 19301 and 19302 | Employment Nondiscrimination | Statute | 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. |
New Jersey | State StatuteNew Jersey: NJS 17B:30-12 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Statute | 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. |
Virginia | State StatuteVirginia: Code of Va. 38.2-3431 | Health Insurance Nondiscrimination | Statute | In the statutes pertaining to group health plans, health status-related factors are defined to include genetic information, and pre-existing condition exclusion may not be based on genetic information in the absence of a diagnosis. |
Florida | State StatuteFlorida: FS 641.31071 et seq. | Health Insurance Nondiscrimination | Statute | Health care service programs may not treat genetic information as a preexisting condition in the absence of a diagnosis. A health maintenance organization that offers group health_insurance_coverage may not establish rules for eligibility or continued eligibility of an individual to enroll under the terms of the contract based on certain health status-related factors, including genetic information. |
Minnesota | State StatuteMinnesota: MS 181.974 | Employment Nondiscrimination | Statute | 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. |
Rhode Island | State StatuteRhode Island: RIGL 27-18-41 | Health Insurance Coverage | Statute | 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. |
Last updated: February 8, 2024