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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 Sort descending Summary
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.

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.

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.

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.

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.

New York Other Topics, Privacy Pending

Prohibits businesses from processing personal information for the purpose of advertising, marketing, soliciting, offering, selling, leasing, licensing, renting, or otherwise commercially contracting for employment, finance, health care, credit, insurance, housing, or education opportunities, in a manner that discriminates against or otherwise makes the opportunity unavailable on the basis of an individual's or class of individuals' actual or perceived predisposing genetic characteristics. Requires businesses to obtain freely given, specific, informed, and unambiguous opt-in consent from an individual to: (a) Process such individual's personal information; and (b) Make any changes in the processing of such individual's information that necessitate a change to the entity's required short-form privacy notice. Carries over to 2022.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

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.

North Carolina Other Topics Pending

Establishes certain rights of perinatal care patients, including the right to receive care and treatment free from discrimination based on characteristics such as genetic information. Carries over to 2022.

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.

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. Carries over to 2022.

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.

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 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.

Georgia Other Lines of Insurance Nondiscrimination Pending

Prohibits life and long-term care insurers that receive information from genetic testing from using the information for any non-therapeutic purpose, including, but not limited to, canceling, limiting, or denying coverage or establishing differentials in premium rates. These insurers also may not require or solicit genetic information, use genetic testing results, or consider a person's decisions or actions related to genetic testing in any manner for any insurance purpose. Carries over to 2022 session.

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.

Massachusetts Privacy Pending

Amends statute to protect personal information under the security breach law. Adds genetic information to the scope of information covered under the law. Referred to the Senate committee on Advanced Information Technology, the Internet and Cybersecurity. Carries over to 2022.

New York Privacy Pending

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Carries over to 2022.

North Carolina Other Topics Pending

Establishes certain rights of perinatal care patients, including the right to receive care and treatment free from discrimination based on characteristics such as genetic information. Carries over to 2022.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.
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Tennessee Other Topics Pending

Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/31/2021 Assigned to General Subcommittee of Senate Health and Welfare Committee. Carries over to 2022.

Massachusetts Other Topics Pending

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Requires companies to file a biennial climate report. The requirements for the form and content of the climate report at a minimum must include: (i) Company climate surveys to be filled out anonymously by employees, which are designed to assess such company's workplace environment including, but not limited to, pay equity, sexual harassment and discrimination based on an individual's age, race, creed, color, national origin, sexual orientation, military status, sex, disability, predisposing genetic characteristics, familial status, marital status or domestic violence victim status. 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