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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 Sort descending Primary Link Topic(s) Bill Status Summary
Utah Employment Nondiscrimination Enacted

Introduced version prohibited a lobbyist from engaging in unlawful harassment, including based on genetic information. The language pertaining to genetic information was not included in the final version signed by the Governor on 3/26/2019.

Utah Privacy Died

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. Died.

Utah Privacy Enacted

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. 3/17/2021 Signed by the Governor. Effective 5/5/2021.

Utah Privacy Died

Requires a government agency to make an annual report to the state auditor regarding: the government agency's collection, use, and disclosure of personal identifying information; any misuse or improper disclosure of personal identifying information; and measures taken to notify individuals of any misuse or improper disclosure. Personal identifying information includes DNA. 3/5/2021 House filed.

Utah Privacy Died

Provides consumers the right to access, correct, and delete certain personal data. Gives consumers the right to opt out of the collection and use of personal data for certain purposes. Requires certain businesses that control and process personal data of consumers to: safeguard personal data; provide clear information to consumers regarding how the consumer's personal data are used; accept consumer requests to exercise the consumer's rights under this bill; comply with a consumer's request to exercise the consumer's rights under this bill; and maintain data protection assessments. Creates a process for a consumer to submit requests and appeal a business's decision regarding the business's processing of the consumer's personal data. Allows the Division of Consumer Protection to accept and investigate consumer complaints regarding the processing of personal data. Creates a right for a consumer to know what personal information a business collects, how the business uses the personal information, and whether the business sells the personal information. Allows a consumer to require a business to delete personal information, with
exceptions, and direct a business that sells personal information to stop selling the consumer's personal information. 3/5/2021 Senate Filed. Died.

Vermont Privacy Enacted

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. Signed by the Governor on March 5, 2020.

Vermont Privacy Died

This bill creates personal property rights to genetic information. The bill also prohibits disclosure of genetic information without informed written consent. Measure failed.

Vermont Privacy Died

Proposes to identify a DNA sample and the results of a DNA analysis performed on the sample as the exclusive property of the person sampled or analyzed and to provide criminal and civil penalties for unlawful DNA collection, analysis, retention, or disclosure. Died.

Vermont Health Insurance Coverage Died

Requires health insurance and Medicaid coverage for chromosomal microarray analysis. Died.

Vermont Privacy Died

Prohibits the state sale of personally identifiable information, including genetic information. Died.

Vermont Other Topics, Privacy Died

Protects consumer privacy by requiring that a business that collects genetic data from a Vermont consumer to provide ancestry or similar information protects the data and keeps it confidential. Carries over to 2022.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. 1/13/2021 Read 1st time & referred to Committee on Economic Development, Housing and General Affairs. Carries over to 2022.

Vermont Neonatal sequencing Introduced

An act relating to incremental implementation of Green Mountain Care.

Vermont Privacy, Research Statute

A person may not be required to undergo genetic testing with some exceptions. Genetic testing may not be performed on any individual or any bodily materials be released for purposes of genetic testing without prior written authorization and informed consent except for (1) medical research where the identity of the subject is unknown, (2) if the research is conducted with anonymized medical information, where individual identifiers are encrypted or encoded, and the identity of the individual is not disclosed, or (3) if the identity of the individual is known, where standards of protection are equal to those contained in regulations promulgated by the federal Office for Protection from research Risk (OPRR).

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended. Died.

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.

Vermont Employment Nondiscrimination Statute

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.

Vermont Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

It is an unfair method of competition or unfair and deceptive act or practice to (1) make or permit any unfair discrimination against any individual by conditioning insurance rates, the provision or renewal of insurance coverage, or other conditions of insurance based on the results of genetic testing where there is not a relationship between the information and the cost of the insurance risk that the insurer would assume by insuring the proposed insured or (2) to violate the Title 18 � 9334.

Vermont Other Topics Enacted

Prohibits a large health care facility shall not discriminate on the basis of genetic information in its provision of financial assistance or in the implementation of its financial assistance policy. Carries over to 2022.

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 Died

This bill prohibits the treatment of genetic information as a preexisting condition in basic health insurance plans in the absence of a diagnosis of the condition related to such information. Measure failed.

Virginia Employment Nondiscrimination Enacted

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. 4/22/20 House: Enacted, Chapter 1228. Effective 7/1/20.

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 Died

This bill amends the state employment genetic nondiscrimination law by adding the Commonwealth or any of its agencies, institutions, or political subdivisions, or any public body to the list of entities covered under the law. Measure failed.

Virginia Privacy Enacted

Establishes a framework for controlling and processing personal data in the Commonwealth. Applies to all persons that conduct business in the Commonwealth and either (i) control or process personal data of at least 100,000 consumers or (ii) derive over 50 percent of gross revenue from the sale of personal data and control or process personal data of at least 25,000 consumers. Outlines responsibilities and privacy protection standards for data controllers and processors. Grants consumer rights to access, correct, delete, obtain a copy of personal data, and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data, a form of personal data, is defined to include the processing of genetic or biometric data. The bill has a delayed effective date of January 1, 2023. Carried over to 2021 Special Session 1. Governor approved 3/2/21.

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 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...

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 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.

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 Privacy Enacted

Establishes a framework for controlling and processing personal data in the Commonwealth. Applies to all persons that conduct business in the Commonwealth and either (i) control or process personal data of at least 100,000 consumers or (ii) derive over 50 percent of gross revenue from the sale of personal data and control or process personal data of at least 25,000 consumers. Outlines responsibilities and privacy protection standards for data controllers and processors. Grants consumer rights to access, correct, delete, obtain a copy of personal data, and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data, a form of personal data, is defined to include the processing of genetic or biometric data. The bill has a delayed effective date of January 1, 2023. Carried over to 2021 Special Session 1. Governor approved 3/2/21.

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 Privacy Died

This bill regulates the collection and maintenance of personally identifiable information, including DNA, by education agencies. Died.

Virginia Employment Nondiscrimination Died

Establishes policies to prevent workplace harassment in the legislative branch. Workplace harassment is defined as unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of certain characteristics, including genetics, that (i) has the purpose or effect of creating an environment that a reasonable person would consider intimidating, hostile, or abusive; (ii) has the purpose or effect of unreasonably interfering with an employee's work performance; or (iii) affects an employee's employment opportunities or compensation. Died.

Virginia Employment Nondiscrimination Died

Requires each legislative branch agency to adopt and implement the Commonwealth Workplace Harassment Policy established by the Department of Human Resource Management. Workplace harassment is defined to include harassment based on genetic information. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

Virginia Employment Nondiscrimination Died

Prohibits discrimination in apprenticeships based on various factors, including genetic information. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

Virginia Privacy Died

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the establishment of rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, in Virginia share health insurance policies. This bill also prohibits pre-existing condition exclusions in these policies based on genetic information in the absence of a diagnosis of a condition related to such information. Measure failed.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the establishment of rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, in Virginia share health insurance policies. This bill also prohibits pre-existing condition exclusions in these policies based on genetic information in the absence of a diagnosis of a condition related to such information. Measure failed.

Washington Privacy Died

Enacts measures to safeguard the privacy, confidentiality, security, and integrity of a consumer's genetic data resulting from direct-to-consumer genetic testing. Died.

Washington Privacy Died

Establishes protections for student biometric information, including a DNA sequence. Died.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Washington Health Insurance Coverage Died

Substitute bill version: Requires the drug utilization review board to consider the safety, efficacy, and cost-effectiveness of drugs and gene therapies in its recommendations to the director of the authority regarding coverage for medical assistance programs. Died.

Washington Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Washington Health Insurance Coverage Died

Establishes the Healthy Washington program to provide comprehensive universal single-payer health care coverage for all residents of the state. The board of Healthy Washington must create requirements and standards for the program and for health care organizations, care coordinators, and health care providers pertaining to nondiscrimination with respect to members and health care providers on the basis of genetic information. Died.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Displaying 1051 - 1100 of 1160

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