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 Primary Link Topic(s) Bill Status Summary Sort descending
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.

New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

Utah Employment Nondiscrimination, Health Insurance Nondiscrimination Died

Removes provisions regulating an employer's and a health insurer's use of personal genetic information. Died.

Maryland Other Topics Died

Removes the ban on directly or indirectly advertising for or soliciting business for any medical laboratory, regardless of location, from anyone except a physician, hospital, medical laboratory, clinic, clinical installation, or other medical care facility. Died.

Maryland Other Topics Died

Repeals a prohibition on advertising for or soliciting business related to direct to consumer genetic testing in the State. 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.

California Other Topics Died

require the Metropolitan Water District of Southern California to adopt rules relating to inappropriate conduct, as defined, by board members, officers, and employees. Inappropriate conduct is defined as any conduct toward others that is physical, verbal, or visual based on or because of various characteristics, including genetic information. Carries over to 2022.

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 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.

West Virginia Privacy Died

Requires a business that collects personal information about consumers to maintain an online privacy policy, make such policy available on its Internet website, and update the information at least once every 12 months. Personal information includes biometric information such as an individual's DNA. 3/15/2021 To House Judiciary. Died.

Maryland Privacy Died

Requires a business, when destroying an employee's or a former employee's records that contain personal information, including a genetic print, to take steps to protect against unauthorized access to or use of the information. States when a business that owns, licenses, or maintains computerized data containing personal information must investigate a security breach. Died.

California Privacy Died

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it�s privacy policies, at the point of sale of the product, and on product packaging. The notice must contain information about the company's privacy policy. 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.

Ohio Privacy Died

Requires a health care provider to obtain an individual's informed consent prior to testing for the presence or absence of a communicable life-threatening disease or infection or immune response to disease or infection that is the subject of an epidemic or pandemic. The results of an individual's test, including any partial or complete biometric record of an individual's DNA sequence is the property of the individual and may only be transmitted to the individual tested. 5/27/20 Referred to Committee on State and Local Government. Died.

California Health Insurance Coverage Died

Requires a health care service plan contract or a health insurance policy that is issued, amended, or renewed on or after January 1, 2015, to provide coverage for genetic testing for Lynch syndrome. Died.

Kentucky Other Topics Died

Requires a health facility that provides perinatal care inform each patient, upon admission regarding the patient's right to to be free of discrimination on the basis of various factors, including genetic information. Died.

Kentucky Other Topics Died

Requires a health facility that provides perinatal care to provide each patient, upon admission or as soon thereafter as reasonably practical, written information regarding the patient's rights, including the right to be free from discrimination on the basis of genetic information. Died.

New Jersey Health Insurance Coverage Died

Requires a hospital service corporation that provides hospital or medical expense benefits to provide coverage for screening to determine whether genetic counseling related to the BRCA1 or BRCA2 genetic mutations is indicated; genetic counseling; and if indicated, BRCA testing. 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 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.

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.

Nevada Health Insurance Coverage Enacted

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. 5/27/2021 Approved by the Governor. Effective 1/1/2022.

Nevada Health Insurance Coverage Statute

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required.

Connecticut Other Topics Died

Requires a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of disease. Died.

Displaying 726 - 750 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