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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 Primary Link Topic(s) Bill Status Sort descending Summary
New York Health Insurance Coverage Pending

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Carries over to 2022.

Hawaii Health Insurance Coverage Pending

Requires every group policy of accident and health or sickness insurance and every individual or group hospital or medical service plan contract to provide coverage for screening to determine whether counseling and testing related to the BRCAl or BRCA2 genetic mutation is indicated and genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Carries over to 2022 session.

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

Washington Health Insurance Coverage Pending

Requires an osteopathic physician and, physician, physician's assistant and advanced registered nurse practitioner to refer a person who is 18 years of age or younger to a children's specialty health care facility that can provide specialized diagnostic services, including genetic testing, unless the person is currently receiving care in such a facility, if the person has experienced any neurological or physical symptoms, including but not limited to seizures or missing developmental milestones. Requires a health carrier must provide coverage for genetic testing including up to a full genome panel as determined by the ordering practitioner to identify potential causes of seizures, neurological symptoms, or other physical symptoms as determined by the health care provider in persons who are 18 years of age or younger. Carries over to 2022.

Massachusetts Privacy Pending

Establishes protections relative to the processing of personal data and the free movement of personal data. Prohibits the processing of genetic data or biometric data for the purpose of uniquely identifying a natural person with certain exceptions. Carries over to 2022.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

Minnesota Lab Developed Tests Pending

Direct-to-consumer genetic testing companies required to provide disclosure notices and obtain consent.

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

Washington Privacy Pending

Creates a charter of people's personal data rights. Establishes the rights of an individual with regard to personal information. Prohibits a person or legal entity processing captured personal information in a manner that discriminates against consumer on the basis of various characteristics, including predisposing genetic characteristics. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

California Neonatal sequencing Pending

Newborn screening: genetic diseases: blood samples collected.

New York Privacy Pending

Enacts the NY privacy act to require companies to disclose their methods of de-identifying personal information such as biometric information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared. Biometric information is defined to include DNA. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

South Carolina Privacy Pending

Enacts the South Carolina Biometric Data privacy Act. Provides certain requirements for a business that collets a consumer's biometric information. Allows consumers to: (1) request the deletion of collected biometric information; and (2) prohibit the sale of biometric information. Prohibits a business from discriminating against a consumer who opts out of the the sale of biometric information. Biometric information includes DNA. Carries over to 2022.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

Massachusetts Privacy Pending

Establishes requirements for specified persons, partnerships or corporations that maintain high-risk information systems. A high-risk information system involves the personal information of a significant numbers of consumers regarding various characteristics, including genetic data. Carries over to 2022.

Washington Privacy Pending

Prohibits a data controller from processing sensitive data concerning a consumer without obtaining the consumer's consent or, in the case of the processing of sensitive data of a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Data controllers must conduct and document a data protection assessment of processing activities involving personal data, including sensitive data such as genetic data. Carries over to 2022.

New York Other Topics Pending

Establishes a genetics advisory council. Requires a preliminary report to the governor and legislature before March 1, 2023 and a final report by December 1, 2023 on issues relating to genetic counseling, genetic testing and public education. Carries over to 2022.

California Privacy, Research Pending

Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. Carries over to 2022.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Pending

Prohibits discrimination based on various characteristics such as genetic information in the following areas: housing; employment; lending; education; public accommodation; insurance; and jury service. Carries over to 2022.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022 session.

South Carolina Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 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. 

  • 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