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 Sort ascending Summary
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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.
.

Rhode Island Coverage and reimbursement Passed Senate

An act relating to insurance -- accident and sickness insurance policies (mandates all insurance contracts/plans/policies provide coverage for the expense of diagnosing/treating infertility for women...

Hawaii Parentage law Passed Senate

Relating to parentage. Enacts portions of the uniform parentage act of 2017 to replace the uniform parentage act of 1973. effective 3/22/2075.

Texas Genetic Data & Law Enforcement Passed House

Relating to postconviction forensic DNA testing.

Massachusetts Neonatal sequencing Introduced

An Act relative to early intervention services for children with prenatal exposure to opioids.

New Jersey Coverage and reimbursement Introduced

Requires health insurers to cover additional mammogram examinations and genetic testing and counseling under certain circumstances.

Hawaii Parentage law Introduced

Relating to parentage. Enacts portions of the uniform parentage act of 2017 to replace the uniform parentage act of 1973. takes effect 1/1/2024.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the fiscal year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

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.

Texas Neonatal sequencing Introduced

Relating to an annual report regarding certain newborn screening tests.

Pennsylvania Genetic Data & Law Enforcement Introduced

An Act amending Title 23 (Domestic Relations) of the Pennsylvania Consolidated Statutes, adding provisions relating to establishment of parent-child relationship for certain individuals; providing fo...

Vermont Neonatal sequencing Introduced

An act relating to incremental implementation of Green Mountain Care.

Rhode Island Consumer Personal Data Privacy, Coverage and reimbursement Introduced

An act relating to insurance -- accident and sickness insurance policies (mandates insurance policies, provides coverage to diagnose & treat infertility for women between 25 & 42 years, including pre...

Minnesota Genetic data storage/privacy/sharing (industry), Lab Developed Tests Introduced

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

Arizona Coverage and reimbursement Introduced

Cancer screening; coverage; gene mutation.

Kansas Genetic Data & Law Enforcement, Parentage law Introduced

Enacting the Kansas uniform parentage act (2017).

Kansas Neonatal sequencing Introduced

Expanding newborn screening services and increasing transfer from the medical assistance fee fund to the Kansas newborn screening fund.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of preimplantation genetic testing with in vitro fertilization under certain conditions.

West Virginia Genetic Data & Law Enforcement Introduced

Relating to DNA data maintained for law enforcement purposes.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the Fiscal Year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

Massachusetts Neonatal sequencing Introduced

An Act relative to early intervention services for children with prenatal exposure to opioids.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

Idaho Other Topics Enacted

If a firefighter is diagnosed with breast cancer after a five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present. Signed by Governor on March 30, 2016. Effective: 07/01/2016.

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.

California Privacy, Research Enacted

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 transfers 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. 10/8/21 Approved by the Governor. Effective immediately.

Maine Employment Nondiscrimination Enacted

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information. 6/8/21 Signed by the Governor. Effective 90 days after adjournment (March 30, 2021).

Oklahoma Employment Nondiscrimination Enacted

This bill amends statutes pertaining to discriminatory practices in employment, housing, and public accommodations. The bill provides exclusive remedies for individuals alleging discrimination in employment on the basis of genetic information. Signed by the Governor May 18, 2011.

Colorado Health Insurance Nondiscrimination, Privacy, Research Enacted

This bill amends definitions in the Colorado genetic nondiscrimination in health insurance law. The bill also adds a new section to the Colorado statutes pertaining to limitations on disclosure of genetic information and allows the use of genetic information by research facilities provided that the information is not disclosed to third parties other than to an individual's physician with his or her consent. Signed by the Governor May 25, 2010.

Maryland Employment Nondiscrimination Enacted

Prohibits the Washington Suburban Sanitary Commission from discriminating against a person on the basis of genetic information. Requires that contracts entered into by the Commission include a provision stating that contractors will not to discriminate in any manner against an employee or an applicant for employment based on a variety of factors, including genetic information. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

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.

Arizona Privacy Enacted

The bill establishes the right of parents to consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as for newborn screening. Signed by the Governor May 10, 2010.

Iowa Health Insurance Nondiscrimination, Privacy, Research Enacted

This bill prohibits health insurers from discriminating based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. Signed by the Governor April 23, 2010.

New York Privacy Enacted

Directs the commissioner of education to conduct a study on the use of biometric identifying technology; prohibits the use of biometric identifying technology in schools until July 1, 2022, or until the commissioner authorizes such purchase or utilization. Biometric information is defined to include a DNA sequence. 12/22/2020 Signed by the Governor. Effective immediately.

Delaware Health Insurance Nondiscrimination Enacted

Prohibits group health insurers from establishing rules for eligibility of an individual to enroll based on a health status related factor of individuals, including genetic information. Prohibits individual health insurers from establishing rules for eligibility of an individual to enroll under the terms of the coverage based on health status-related factors, including genetic information. Signed by the Governor on July 15, 2013.

Minnesota Health Insurance Nondiscrimination, Research Enacted

This bill applies to insurers that provide Medicare supplement policies or certificates only. Denying or conditioning the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information is prohibited. These insurers of these policies or certificates may not (1) discriminate with respect to pricing on the basis of genetic information, (2) request or require an individual or family member to undergo a genetic test (with an exception regarding requesting a test), or (3) use the manifestation of disease in an individual as genetic information about another group members and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met. Approved by the governor May 22, 2009.

Virginia Privacy Enacted

Establishes a framework for controlling and processing personal data in the Commonwealth. Applies to all persons that conduct business in the Commonwealth and either (i) control or process personal data of at least 100,000 consumers or (ii) derive over 50 percent of gross revenue from the sale of personal data and control or process personal data of at least 25,000 consumers. Outlines responsibilities and privacy protection standards for data controllers and processors. Grants consumer rights to access, correct, delete, obtain a copy of personal data, and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data, a form of personal data, is defined to include the processing of genetic or biometric data. The bill has a delayed effective date of January 1, 2023. Carried over to 2021 Special Session 1. Governor approved 3/2/21.

California Employment Nondiscrimination Enacted

This bill, referred to as CalGINA, prohibits discrimination based on genetic information in several areas in addition to those addressed by existing law, including in housing, at certain business facilities, at state agencies, entities funded by or receiving financial assistance from the state, and in the provision of emergency services. Signed by the Governor on September 6, 2011.

Displaying 301 - 350 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