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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.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Sort descending Summary
Texas Health Insurance Nondiscrimination, Privacy, Research Statute

Individual and group health benefit plans that request an applicant for coverage to submit to a genetic test for a permissible purpose must notify the applicant that the test is required, disclose to the applicant the proposed use of the results, and obtain prior written informed consent. A health benefit plan issuer may not use genetic information or the refusal of an applicant to submit to a genetic test to reject, deny, limit, cancel, refuse to renew, increase the premiums for, or otherwise adversely affect eligibility for or coverage under the plan. Genetic material obtained from an individual for a genetic test must be destroyed promptly after the purpose for which it was obtained with some exceptions, including (1) authorized retention of the sample for medical treatment or scientific research or (2) if the sample was obtained for research that is cleared by an institutional review board, and retention of the sample is under a requirement the institutional review board imposes on a specific research project or authorized by the research participant with institutional review board approval under federal law. A health benefit plan issuer may redisclose genetic information without authorization for actuarial or research studies if the tested individual could not be identified in any actuarial or research report and any materials that identify a tested individual are returned or destroyed as soon as reasonably practicable.

Connecticut Other Lines of Insurance Nondiscrimination Statute

Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record.

Massachusetts Employment Nondiscrimination Statute

An employer may not discriminate against an individual in compensation or in terms, conditions or privileges of employment, unless based upon a bona fide occupational qualification, because of genetic information. The statutes include nondiscrimination provisions that apply to other entities, including but not limited to labor organizations and employment agencies. The Massachusetts Commission against discrimination investigates complaints of unfair discrimination based on genetic information.

New York Health Insurance Nondiscrimination Statute

Insurers or corporations delivering group or blanket health policies that provide hospital, surgical or medical expense coverage may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Individual and group or blanket health insurance policies or contracts may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis.

Michigan Health Insurance Nondiscrimination Statute

An expense-incurred hospital, medical, surgical policy or certificate or health care corporation may not require an insured or his or her dependent or an asymptomatic applicant or his or her asymptomatic dependent to undergo a genetic test or disclose whether a genetic test has been conducted, the results of a genetic test or genetic information.

Oklahoma Health Insurance Nondiscrimination, Research Statute

Any individual, corporation, association, partnership, insurance support organization, fraternal benefit society, insurance producer, third-party administrator, self-insurer, or any other legal entity engaged in the business of insurance that issues accident and sickness insurance policies or administers a health insurance plan may not deny or condition the issuance or effectiveness of a policy on a pre-existing condition or genetic information. These entities also may not discriminate with respect to pricing a policy or certificate, including premiums, based on genetic information. A violation is an unfair and deceptive act or practice. An insurer also may not request or require a genetic test with an exception for research. An insurer may request a genetic test if the request is pursuant to research that complies with the Common Rule and other specified criteria are met.

California Health Insurance Nondiscrimination, Privacy Statute

A person who negligently or willfully discloses genetic test results in an individuals medical records who is applying for or enrolled in a health care service plan, except with written authorization in the format specified, is subject to fines as set forth in the statutes.

Maine Privacy, Research Statute

An individual's health care information, including information about individual cells or their components or genetic information, is confidential. Authorization is required to disclose this information other than to the individual by the health care practitioner or facility with some exceptions. The definition of health care information excludes information that protects the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.

New Hampshire Privacy Statute

No individual or his/her family member may be required to undergo genetic testing as a condition of doing business with another person. Genetic testing may not be performed on any individual or anywhere on any resident of the state based on bodily materials obtained within the state without prior written and informed consent with some exceptions. Additional provisions address disclosure of results. The statutes establish a right to civil action by aggrieved individuals.

Vermont Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A policy of insurance may not be underwritten or conditioned on a requirement to undergo genetic testing or the results of genetic testing. Civil and criminal penalties are set forth for violations.

Florida Other Lines of Insurance Nondiscrimination Statute

Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

Hawaii Health Insurance Nondiscrimination, Privacy Statute

No insurer providing accident and health or sickness insurance coverage or extended health_insurance_coverage, mutual benefit society, fraternal benefit society, or health maintenance organization may use an individual's or a family member's genetic information or a request for genetic services to (1) deny or limit any coverage or (2) establish eligibility, continuation, enrollment, or premium payment. These entities may not request or require collection or disclosure of genetic information of an individual or family member or disclose genetic information without written consent.

Missouri Employment Nondiscrimination Statute

An employer may not use genetic information or genetic test results of an employee or prospective employee to distinguish between, discriminate against, or restrict any right or benefit otherwise due or available to such employee or prospective employee. Exceptions are provided for the underwriting of group life, disability income and long-term care insurance, actions required by law or regulation, action taken with written permission of an employee or prospective employee, and the use of genetic information when it is directly related to job performance and assigned responsibilities.

South Carolina Health Insurance Nondiscrimination Statute

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

California Health Insurance Nondiscrimination Statute

The statutes require carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information.

Maryland Other Topics Statute

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information.

New Mexico Other Topics Statute

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

Washington Employment Nondiscrimination Statute

A person, firm, corporation, or the state of Washington, its political subdivisions, or municipal corporations may not require any employee or prospective employee to submit genetic information or submit to screening for genetic information as a condition of employment or continued employment.

Arkansas Employment Nondiscrimination Statute

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

Indiana Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

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.

Kentucky Health Insurance Nondiscrimination Statute

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.

Nebraska Health Insurance Nondiscrimination Statute

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.

Texas Health Insurance Nondiscrimination Statute

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.

Connecticut Privacy Statute

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.

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Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024