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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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
Tennessee 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.

Tennessee Privacy Enacted

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. Effective 7/1/2018.

Tennessee Other Topics Enacted

Extends the sunset date of the genetic advisory committee to June 30, 2025. Signed by the Governor 3/22/2019. Pub. Ch. 43.

Tennessee Health Insurance Nondiscrimination Died

Prior to amendment, this bill exempt insurance pools created by an association of private, not-for-profit educational institutions that has been in existence for at least 25 years from the provisions governing genetic information nondiscrimination. This language was removed from the final version of the bill. The companion bill substituted with SB 343 signed by the Governor May 15, 2007.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Tennessee Privacy Died

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. 4/18/2018 Companion House bill substituted.

Tennessee Privacy Statute

Schools must obtain written informed consent from a parent, legal guardian, or student, if the student is 18 years of age or older, before the collection of individual student biometric data, including DNA. The law also establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Tennessee Health Insurance Nondiscrimination Statute

An insurance provider may not deny or cancel health_insurance_coverage or vary the premiums, terms, or conditions for health_insurance_coverage for an individual or his or her family member on the basis of a request or receipt of genetic services. An insurer may not request or require an individual to whom it provides health_insurance_coverage or an applicant to disclose to the insurer genetic information about the individual or family member of the individual. Life insurance, disability income, long-term care, accident only, hospital indemnity or fixed indemnity, dental or vision policies are exempt from the law.

Tennessee Other Topics Died

Creates a genetic advisory committee. Substituted by 2019 SB 127, which became Pub. Ch. 43 April 3, 2019.

Tennessee Health Insurance Nondiscrimination Statute

Under the Health Insurance Portability, Availability and Renewal Act group health plans and other issuing group health_insurance_coverage may not base rules for eligibility or continued eligibility on a health status-related factor, including genetic information.

Tennessee Privacy Died

Prohibits a direct-to-consumer genetic testing business entity from sharing personally identifiable genetic test data or other personally identifiable information about a consumer with a third party without the express written consent of the consumer or a subpoena or court order. Died.

Tennessee 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.

Texas Privacy Died

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization. Died.

Texas Use of Residual Newborn Screening Specimens Statute

Reports, records, and information obtained by the health department for newborn screening that do not identify a child or the family of a child will not be released for public health research purposes unless a parent, managing conservator, or guardian of the child consents to disclosure. Newborn screening blood spots and associated data are confidential under law and may only be used as specified. If a family consents to disclosure of nonidentifiable reports, records and information for public health research, any subsequent disclosures must be approved by an IRB or privacy board of the health department and the Health Commissioner or his or her designee. research for public health purposes is defined to include purposes that relate to cancer, a birth defect, an infectious disease, a chronic disease, environmental exposure, or newborn screening.

Texas Privacy Died

Limits the use of biometric identifiers by governmental bodies. Biometric identifiers are defined to include a DNA sample. Died.

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.

Texas Other Topics Died

Proposes a Constitutional Amendment providing for the recognition of equal rights of all people. States that equality under the law may not be denied or abridged based on numerous factors, including genetic information. Died.

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.

Texas Health Insurance Nondiscrimination Died

Creates the Healthy Texas Program. The board for the program must create policies that promote nondiscrimination with respect to members and providers with regard to genetic information. Died.

Texas Employment Nondiscrimination Statute

It is an unlawful employment practice if an employer, labor organization, or employment agency discriminates against an individual on the basis of genetic information or refusal to submit to a genetic test. An employer, labor organization, or employment agency commits an unlawful employment practice if these entities limit, segregate, or classify an employee, member, or applicant in a way that would deprive or tend to deprive the employee, member, or applicant of employment opportunities or otherwise adversely affect the status of his or her status on the basis of genetic information or the refusal to submit to a genetic test.

Texas Genetic Data & Law Enforcement Passed House

Relating to postconviction forensic DNA testing.

Texas Privacy Died

This bill gives an individual property rights to his or her DNA sample. A person may not collect a DNA sample, perform a genetic test or retain a DNA sample, with few exceptions such as for law enforcement purposes. Measure failed.

Texas Privacy Died

Establishes protections for the privacy of a consumer's personal information collected by certain businesses, including biometric information. Biometric information includes DNA. Died.

Texas Employment Nondiscrimination Statute

The Texas Workforce Commission collects and reports on complaints of employment discrimination, including those related to the use of genetic information.

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 Privacy Died

This bill establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

Texas Privacy Enacted

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization. 6/9/2017 Signed by the Governor.

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 Employment Nondiscrimination, Privacy, Research Statute

The statutes restrict the use and disclosure of genetic tests and the use of family history by a licensing authority. A sample obtained from an individual for a genetic test must be destroyed promptly after the purpose for which the sample 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. Genetic information may not be disclosed without written authorization with some exceptions, including (1) if the disclosure is for information from a research study in which the procedure for obtaining informed written consent and the use of the information is governed by national standards for protecting participants involved in research projects, including guidelines issued under 21 C.F.R. Part 50 and 45 C.F.R. Part 46 and (2) the information does not identify a specific individual.

Texas Neonatal sequencing Introduced

Relating to an annual report regarding certain newborn screening tests.

Texas Privacy Died

Prohibits a governmental body from capturing or possessing a biometric identified, defined to include DNA, unless it has specific, explicit statutory or has the written consent of the individual or the individual's legal guardian. Died.

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 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

Creates a personal property right in a sample of genetic material and in the genetic information obtained as a result of a genetic test performed on an individual's sample. 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

Establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. 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

Prohibits a governmental body from capturing or possessing a biometric identified, defined to include DNA, unless it has specific, explicit statutory or has the written consent of the individual or the individual's legal guardian. 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.

Texas Privacy Died

Limits the use of biometric identifiers by governmental bodies. Biometric identifiers are defined to include a DNA sample. Died.

Texas Health Insurance Nondiscrimination, Privacy Statute

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization.

Utah Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. The genetic testing privacy act, which prohibits health insurance discrimination, is applicable to insurers except as permitted under the Medicare Supplement Minimum Standards Act. The insurance commissioner may adopt rules regarding nondiscrimination for genetic testing or genetic information in Medicare supplement policies and certificates.

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 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 Statute

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.

Utah Privacy Enacted

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities. Signed by the Governor on 3/23/2016.

Utah Health Insurance Coverage Statute

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21.

Utah Health Insurance Coverage Enacted

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21. March 26, 2019 Governor Signed. Effective 60 days after adjournment on March 14, 2019.

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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. 

  • 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: September 14, 2023