NHGRI logo

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 ascending Primary Link Topic(s) Bill Status Summary
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 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 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 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 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.

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 Neonatal sequencing Introduced

Relating to an annual report regarding certain newborn screening tests.

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

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 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

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 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 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 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 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 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 Privacy Died

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

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 Health Insurance Nondiscrimination Enacted

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, which was signed by the Governor May 15, 2007.

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.

Displaying 126 - 150 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