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
North Dakota Health Insurance Coverage Died

Requires the public employees retirement board to provide coverage for the expenses of the diagnosis of infertility, fertility treatment, and standard fertility preservation services if recommended and medically necessary. Fertility treatment includes genetic testing. Died.

California Other Topics Enacted

Requires the State Department of Health Care Services to provide individuals diagnosed with breast cancer information relating to breast cancer susceptibility gene (BRCA) mutations. The goal is to help achieve increased genetic counseling and screening rates of individuals for whom BRCA test results can inform treatment decisions. 10/12/2017 Chaptered by Secretary of State - Chapter 693, Statutes of 2017.

Georgia Health Insurance Coverage Enacted

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. Act 587 Effective 1/1/2021.

Georgia Health Insurance Coverage Statute

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation.

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.

Nevada Health Insurance Coverage Died

Requires the State Plan for Medicaid to pay the nonfederal share of expenditures incurred to perform genetic testing to detect birth defects in the fetus of a pregnant woman who is 40 years of age or older. Died.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

New York Other Topics Statute

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's.

Maryland Privacy Died

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information, including biometric information. Biometric information is defined as physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

Maryland Privacy Enacted

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Enacted without Governor's signature 5/8/2020. Effective 10/1/2024.

Maryland Privacy Statute

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Not effective until 10/1/2024.

New York Privacy Died

Requires written notification to parents of infant's whose DNA or blood spots are retained. Died.

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

South Carolina Use of Residual Newborn Screening Specimens Statute

Residual newborn screening blood samples may be released for purposes of confidential, anonymous scientific study unless the newborn screening program is otherwise directed. The release of a blood sample must conform with departmental regulations. At the time of testing or at any time after that, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to: (1) return a blood sample in its entirety and any test results not less than two years after the date of testing; (2) destroy a blood sample in not less than two years after the date of the testing; or (3) store a blood sample but not release the blood sample for confidential, anonymous scientific study. A blood sample released for confidential, anonymous study must not contain identifiable information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information.

Washington Other Topics Died

Restricts genome editing of human embryos. Died.

Delaware Privacy Died

Restricts the use of a child's personally identifiable information, including DNA and other genetic material, by the operator of an internet service. Substitute bill passed by House and Senate, but substitute bill does not include language regarding DNA and genetic information. Substituted bill was signed by the Governor.

Louisiana Employment Nondiscrimination Died

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes in present law, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell trait, and genetic information. Died.

Louisiana Employment Nondiscrimination Enacted

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell traits, and genetic information. Signed by the Governor on June 19, 2014.

Montana Neonatal sequencing Approved

Revise laws related to collection of genetic material for newborn screenings.

New Hampshire Use of Residual Newborn Screening Specimens Statute

Samples may not be used for other research or DNA testing purposes unless authorized by the parent or guardian.

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.

Washington Privacy Died

Seeks to increase consumer data transparency. The bill address consumer biometric information, which is defined to include DNA. Died.

Delaware Privacy Pending

Seeks to provide consumers with critical information about how their personal information is being used by data brokers. Data brokers must register with the Consumer Protection Unit of the Department of Justice and answer questions regarding their use of personal information that would be published online to inform consumers. Data brokers are required annually to complete an electronic form designated by the Director of Consumer Protection. Data brokers must report on the form the types of consumer data, including genetic data, collected directly from consumers and from consumers� devices. Carries over to 2022.

Displaying 876 - 900 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