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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.

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State Primary Link Topic(s) Bill Status Summary
Ohio Health Insurance Nondiscrimination Enacted

Amends the definition of "genetic screening or testing" used in the state health_insurance_nondiscrimination statute. Replaces "abnormalities, defects, or deficiencies," in the definition with "genotypes, mutations, or chromosomal changes." Carries over to 2022.

Ohio Health Insurance Coverage Enacted

Requires the state Medicaid program, individual health insurers and group health insurers to cover breast cancer screening for women meeting certain conditions, including those who have a genetic predisposition to breast cancer. Carries over to 2022.

Oklahoma Privacy Pending

Creates the Oklahoma Computer Data privacy Act, which applies to certain businesses that collect consumers' personal information, including biometric information. Provides guidelines for the use of personal information in research. Provides consumers the right to request disclosure of certain information; the right to request the deletion of their information; the right to request and receive a disclosure of personal information sold or disclosed; and the right to opt in and out of the sale of their personal information. Biometric information is defined to include DNA. 3/22/2021 Second Reading in Senate Judiciary. Carries over to 2022.

Oklahoma Other Topics, Privacy Pending

Requires a practitioner to offer to administer a pharmacogenomic test to a patient prior to the prescription of any psychotropic drug. The practitioner is required by the measure to inform the patient that pharmacogenomic tests have not been approved by the Food and Drug Administration. The practitioner must obtain the patient�s informed consent prior to ordering a pharmacogenomic test and must provide an estimate to the patient if the practitioner is aware of the cost. 2/2/2021 Second Reading. Referred to Senate Health and Human Services. Carries over to 2022.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 2/23/2021 Committee recommended measure be held for further study. Died.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 4/1/2021 Committee recommended measure be held for further study. Died.

South Carolina Privacy Pending

Enacts the South Carolina Biometric Data privacy Act. Provides certain requirements for a business that collets a consumer's biometric information. Allows consumers to: (1) request the deletion of collected biometric information; and (2) prohibit the sale of biometric information. Prohibits a business from discriminating against a consumer who opts out of the the sale of biometric information. Biometric information includes DNA. Carries over to 2022.

South Carolina Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Carries over to 2022.

South Carolina Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Carries over to 2022.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Enacted

Existing law prohibits health carriers, in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision from, in connection with the offer, sale, or renewal of insurance: (1) requiring or requesting an individual or a blood relative of the individual to take a genetic test; or (2) taking into consideration the fact that a genetic test was refused by an individual or a blood relative of the individual. Amends existing law by adding life insurers and long-term care insurers to covered entities. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted. 3/29/2021 Signed by the Governor. Effective 1/1/2022.

Tennessee Other Topics Pending

Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/30/2021 Deferred for summer study in Health Subcommittee.

Tennessee Other Topics Pending

Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/31/2021 Assigned to General Subcommittee of Senate Health and Welfare Committee. Carries over to 2022.

Texas Other Lines of Insurance Nondiscrimination Died

Relates to a prohibition on the use of genetic information gathered from direct-to-consumer genetic tests by a long-term care benefit plan issuer or a life insurance company. 5/17/2021 Received from the House. Died.

Texas Privacy Died

Requires an individual or the individual�s authorized representative provide express consent for a person to: (1) obtain the individual �s genetic material or genetic information; (2) perform a genetic analysis of the individual or any other analysis or test of the individual that requires the individual �s genetic material; (3) retain the individual �s genetic material or genetic information; or (4) disclose, including through sale or donation, the individual �s genetic material or genetic information. 3/29/2021 Referred to House Public Health Committee. Died.

Texas Privacy Died

Prohibits a state agency from disseminating to any person any personal data of an individual without the individual �s written consent. A state agency must retain the written consent of an individual obtained per certain requirements. A state agency may not require an individual to consent to dissemination of the individual�s personal data in exchange for access to the services provided by the agency or to the agency�s Internet website. 3/3/2021 Referred to Finance. Died.

Texas Privacy Died

Relates to the capture and use of an individual's biometric identifiers, specimen, or genetic information by a governmental body or peace officer or by a person for commercial purposes. Died.

Texas Privacy Died

Requires an individual or the individual�s authorized representative provide express consent for a person to: (1) obtain the individual �s genetic material or genetic information; (2) perform a genetic analysis of the individual or any other analysis or test of the individual that requires the individual �s genetic material; (3) retain the individual �s genetic material or genetic information; or (4) disclose, including through sale or donation, the individual �s genetic material or genetic information. passed_senate. 5/17/2021 Referred to House Public Health Committee. Died.

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.

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.

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 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 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.

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 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.

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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