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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.

Search

State Primary Link Topic(s) Bill Status Summary Sort descending
Maryland Employment Nondiscrimination Died

Requires managers and supervisors in the Legislative and Executive branches of State government to immediately report certain incidents of workplace bullying, including bullying based on genetic information. 3/11/2019 Unfavorable Report by Finance; Withdrawn.

Maryland Employment Nondiscrimination Died

Requires managers and supervisors in the Legislative and Executive branches of State government to immediately report certain incidents of workplace bullying, including bullying based on genetic information. 3/5/2019 Unfavorable Report by House Rules and Executive Nominations; Withdrawn.

Rhode Island Health Insurance Coverage Died

Requires nonprofit hospital service contract, plan, or insurance policy delivered, issued for delivery, or renewed in this state must provide coverage of all blood testing services, including specified genetic tests. Died.

New York Use of Residual Newborn Screening Specimens Died

Requires parental consent for newborn DNA storage. The bill states that no test, DNA, blood spot, or other genetic information may be retained with an infant's identifying information other than for the purpose of newborn screening without parental consent. Died.

New York Health Insurance Coverage Died

Requires policies of hospital, surgical or medical care to provide coverage for ovarian cancer screening. These policies also must provide coverage for specific services if a person is believed to be at increased risk of ovarian cancer to due to family history, personal history or positive genetic testing. Died.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, medical or surgical care to provide coverage for screening for ovarian cancer, upon examination by a physician or other factors, including genetic testing, for an ultrasound at specified periods. Died.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, surgical or medical to cover screening for ovarian cancer, including genetic testing. Additional coverage is required if genetic testing is positive. Died.

Missouri Privacy Died

Requires state education agencies to obtain parental consent to collect biometric records from parents, K-12 students or through data sharing agreements with any other entity. Biometric records are defined to include DNA sequences. Died.

New Jersey Other Topics Died

Requires testing of infants for genetic mutations associated with the development of hereditary hemochromatosis. Died.

Connecticut Research, Use of Residual Newborn Screening Specimens Enacted

Requires that all research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the health commissioner. 6/23/2017 Signed by the Governor. Effective 10/1/2017.

Massachusetts Other Topics Died

Requires that certain state entities make a dedicated effort to encourage diversity and advance equity based on race, color, religious creed, national origin, sex, gender identity, sexual orientation, genetic information, ancestry, disability, and language in any recommendations, policies, programs and initiatives developed. 1/5/2021 In Senate. No further action taken. Died.

Arizona Privacy Enacted

Requires that genetic testing information be released only as authorized by state or federal law, including the Health Insurance Portability and Accountability Act privacy standards. Permits the release of genetic testing information to a health care provider who is providing care to the person tested and the health care provider's agent or employee. Allows a legal representative of a clinical laboratory that is in possession of the medical record to receive the genetic test and information derived from the genetic test when the laboratory is obtaining legal advice. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results. Signed by the Governor on May 22, 2019.

Iowa Use of Residual Newborn Screening Specimens Died

Requires the Center for Congenital and Inherited Disorders to adopt rules to prohibit the retention and ensure proper disposal of residual newborn screening specimens. The Center must incinerate any residual specimens being stored before the effective date of the bill. Died.

Massachusetts Employment Nondiscrimination Pending

Requires the commission on workplace harassment and sexual assault in the legislature to research and develop model workplace harassment policies for consideration and use by the Senate and House of Representatives. The model policies must address identity-based harassment, including harassment based on genetic information. Carries over to 2022.

Massachusetts Privacy Died

Requires the department of consumer affairs and business to adopt regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Personal information includes biometric indicators (or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry). 6/27/2018 Accompanied a study order, see H4648.

Delaware Privacy Died

Requires the Department of Education to promulgate rules and regulations relating to the privacy and protection of student data, including DNA or other genetic material. Senate Substitute Version passed in House and Senate -- DNA or other genetic information is replaced by biometric information. The term biometric information is not defined. Substituted bill was signed by the Governor.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

Maryland Other Topics Died

Requires the Maryland Department of Health to do the following: (1) by January 1, 2023, develop gene sequence and customer screening guidelines for gene synthesis providers and manufacturers of gene synthesis equipment that include certain requirements; (2) develop a process to certify that gene synthesis providers and manufacturers of gene synthesis equipment are in compliance with the guidelines requiring, on or after January 1, 2024, the Department to certify certain gene synthesis providers and equipment manufacturers. Gene synthesis provider does not include a research scientist making gene synthesis products for the research scientist's own use or for use by another research scientist. In the House - Withdrawn by Sponsor. Died.

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.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making
pharmacogenomics available statewide. Carries over to 2022 session.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making pharmacogenomics available statewide. Carries over to 2022 session.

Minnesota Privacy Enacted

Requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act. March 21, 2013 Approved by the Governor.

Maryland Privacy Died

Requires the Motor Vehicle Administration to make available to an applicant for a driver's license, an identification card, or a moped operator's permit the opportunity to upgrade to an enhanced identification document. A person who applies for enhanced identification must provide a biometric identifier, which may include DNA. Died.

Maryland Other Topics, Privacy Died

Requires the Motor Vehicle Administration to offer to an applicant for a driver's license, identification card, or moped operator's permit the opportunity to upgrade to an enhanced identification document. The enhanced ID will be embedded with memory and a microprocessor chip that stores biometric identifiers, which may include DNA. Died.

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.

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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