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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.

State Primary Link Topic(s) Bill Status Summary
Vermont Privacy Statute

Requires (1) the State Court Administrator for the Judicial Branch; (2)the Director of Information Technology for the Legislative Branch; and (3) the Chief Data Officer within the Agency of Digital Services and the Chief Records Officer within the Office of the Secretary of State for the Executive Branch to conduct a data privacy inventory for their respective branches of government. The inventory must address the collection and management of personally identifiable information, including genetic information. Requires a report to the legislature on or before January 15, 2021.

Virginia Research Statute

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.

Virginia Health Insurance Nondiscrimination, Privacy Statute

A person proposing to issue, re-issue, or renew accident and sickness insurance, excluding disability income insurance, issued by any insurer providing hospital, medical and surgical or major medical coverage on an expense incurred basis, a corporation providing a health services plan, or an HMO providing a health care plan may not on the basis of any genetic information or a request for genetic services (1) terminate, restrict, limit, or otherwise apply conditions to coverage of an individual or restrict the sale to an individual, (2) cancel or refuse to renew the coverage of an individual, (3) exclude an individual from coverage, (4) impose a waiting period, (5) require inclusion of a rider that excludes coverage for certain benefits and services, (6) establish differentials in premium rates for coverage, or (7) disclose any genetic information about an individual or his/her family member collected or received in connection with any insurance transaction unless the disclosure is made with the written authorization of the individual.

Virginia 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.

Virginia Employment Nondiscrimination Statute

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.

Virginia Employment Nondiscrimination Statute

An employer may not request, require, solicit or administer a genetic test as a condition of employment or refuse to hire, fail to promote, discharge or otherwise adversely affect any terms or conditions of employment of any employee or prospective employee solely on the basis of a genetic characteristic or the results of a genetic test, regardless of how the employer obtained such information or results. An employee may bring an action in a court of competent jurisdiction over an employer who took adverse action against the employee.

Washington Privacy Statute

Modifies the state privacy law pertaining to biometric information by adding DNA to the definition of biometric identifiers. Provides an exception for law enforcement agencies.

Washington Health Insurance Nondiscrimination Statute

Makes state law consistent with selected federal consumer protections in the patient protection and affordable care act. Prohibits a health carrier or health plan from establishing rules for eligibility based on health-status related factors such as genetic information.

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.

Washington Privacy, Research Statute

A health care provider, an individual who assists a health care provider in the delivery of health care, or an agent and employee of a health care provider may not disclose health care information, including a patient's deoxyribonucleic acid and identified sequence of chemical base pairs, about a patient to any other person without the patient's written authorization. A health care provider may disclose health care information to researchers if the health care provider or health care facility obtains the informed consent for the use of the patient's health care information for research purposes.

West Virginia Privacy Statute

The Department of Education must prohibit the collection of confidential student information, including genetic information. The Department may not transfer student or redacted data that is confidential except under specified circumstances.

West Virginia Health Insurance Nondiscrimination Statute

A health benefit plan issued in connection with a group health plan may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A health status-related factor is defined to include genetic information as defined in section of the statutes pertaining to individual group accident and sickness insurance.

Wisconsin Employment Nondiscrimination Statute

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.

Wisconsin Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

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.

Wyoming Privacy Statute

The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law.

Wyoming Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A policy of group or blanket disability insurance or health benefit plan covering small employers may not treat genetic information as a pre-existing condition in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. These entities also may not deny eligibility, or adjust premium or contribution rates based on genetic testing information of an individual or family member or request or require predictive genetic testing information about an individual or family member except as needed for diagnosis, treatment, or payment purposes.

Texas Genetic data storage/privacy/sharing (industry) Approved

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

Texas Genetic Data & Law Enforcement Passed House

Relating to postconviction forensic DNA testing.

Texas Genetic data storage/privacy/sharing (industry) Introduced

Relating to the use of an individual's genetic data by certain genetic testing companies for commercial purposes; authorizing a civil penalty.

Texas Neonatal sequencing Introduced

Relating to an annual report regarding certain newborn screening tests.

Vermont Neonatal sequencing Introduced

An act relating to incremental implementation of Green Mountain Care.

Virginia Parentage law Died

Provides that
any person who knowingly gives any false information or makes any
false statements for the purpose of determining paternity is guilty
of a Class 6 felony. The bill further requires an a...

Virginia Genetic data storage/privacy/sharing (industry), Lab Developed Tests Enacted

Establishes requirements for direct-to-consumer genetic testing companies, defined in the bill, including requirements related to information to be provided to consumers, express consent requirements...

Virginia Genetic data storage/privacy/sharing (industry) Died

Establishes requirements for direct-to-consumer genetic testing companies, including requirements related to information to be provided
to consumers, consent requirements, requirements related to sec...

West Virginia Genetic Data & Law Enforcement Introduced

Relating to DNA data maintained for law enforcement purposes.

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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