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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
Michigan Health Insurance Nondiscrimination, Privacy Enacted

Requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests. Signed by the Governor May 21, 2013.

Vermont Other Topics Enacted

Prohibits a large health care facility shall not discriminate on the basis of genetic information in its provision of financial assistance or in the implementation of its financial assistance policy. Carries over to 2022.

Nevada Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Enacted

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Signed by the Governor May 29, 2009.

Wyoming Privacy Enacted

Prohibits the collection, retention and disclosure of genetic information without informed consent. Establishes requirements for the retention and destruction of genetic information. 3/16/2018 Governor Signed HEA No. 0060.

California Employment Nondiscrimination Enacted

Prohibits discrimination against apprentices or applicants for apprenticeships in the building and construction trade based on genetic information. 9/22/2018 Chaptered by Secretary of State - Chapter 675, Statutes of 2018.

Maine Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers from requesting, requiring, purchasing or using information obtained from a direct-to-consumer genetic test without consent of the individual tested. Types of insurance covered under the law would include life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance or an annuity. June 5, 2019 Signed by the Governor. Effective 90 days after adjournment on 6/19/19.

Oklahoma Use of Residual Newborn Screening Specimens Enacted

This bill requires parental consent required to store, transfer, use or database DNA from any newborn child. Signed by the Governor May 11, 2010.

Georgia Genetic Data & Law Enforcement Enacted

Relating to determination of paternity, so as to align evidentiary medical and genetic testing with the Uniform Parentage Act of 2017.

Alaska Health Insurance Nondiscrimination Enacted

This bill requires health care insurers in the individual market to comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-53. Health care insurers in the group market must comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91. Signed into law August 5, 2009.

Indiana Health Insurance Nondiscrimination Enacted

The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor.

New York Other Topics Enacted

Establishes a Hate Crime Task Force. The task force will issue reports and publications in conjunction with the Division on Human Rights to combat discrimination based on a variety of factors, including genetic information. 4/20/2017 Signed by the Governor Chapter 55.

California Health Insurance Nondiscrimination Enacted

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that is offered to or covers a small employer may not establish rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the policy or contract based on various health status-related factors such as genetic information. 10/8/21 Approved by the Governor. Effective 1/1/2022.

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.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Enacted

Existing law prohibits health carriers, in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision from, in connection with the offer, sale, or renewal of insurance: (1) requiring or requesting an individual or a blood relative of the individual to take a genetic test; or (2) taking into consideration the fact that a genetic test was refused by an individual or a blood relative of the individual. Amends existing law by adding life insurers and long-term care insurers to covered entities. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted. 3/29/2021 Signed by the Governor. Effective 1/1/2022.

California Health Insurance Nondiscrimination Enacted

This bill requires carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information. Signed by the Governor on September 30, 2010.

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.

New York Privacy Enacted

Directs the director of the office of information technology services 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 of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence. 1/25/2021 Substituted by A954. 1/28/2021 Signed by the Governor. Effective immediately.

Connecticut Privacy Enacted

Creates a task for concerning consumer privacy. The introduced version of the bill was amended to create a task force rather than set forth certain requirements pertaining to the privacy of personal information such as DNA. Signed by the Governor 7/9/2019.

Michigan Health Insurance Nondiscrimination Enacted

Amends the state law pertaining to genetic_discrimination in health insurance. The bill removes the provision in the statutes that states, "This section does not prohibit an insurer of expense-incurred hospital, medical, or surgical policy or certificate to answer questions concerning family history." 7/13/2016 Approved by the Governor.

Vermont Privacy Enacted

Requires (1) the State Court Administrator for the Judicial Branch; (2)the Director of Information Technology for the Legislative Branch; and (3) the Chief Data Officer within the Agency of Digital Services and the Chief Records Officer within the Office of the Secretary of State for the Executive Branch to conduct a data privacy inventory for their respective branches of government. The inventory must address the collection and management of personally identifiable information, including genetic information. Requires a report to the legislature on or before January 15, 2021. Signed by the Governor on March 5, 2020.

Nevada Employment Nondiscrimination Enacted

Adds genetic information to the list of categories included in an apprenticeship agreement for which discrimination is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information. June 5, 2019 Approved by the Governor. Chapter 377.

California Other Topics Enacted

Prohibits a person from selling a gene therapy kit unless the seller includes a notice on the seller�s internet website that is displayed to the consumer prior to the point of sale, and on a label on the package, stating that the kit is not for self-administration. Chaptered by Secretary of State. Chapter 140, Statutes of 2019. Effective January 1, 2020.

Maine Privacy Enacted

Protects the personal information, including genetic information, pertaining to state employees. Signed by the Governor on June 20, 2019.

Oklahoma Health Insurance Nondiscrimination, Research Enacted

This bill modifies the state Genetic Information Nondiscrimination in Insurance Act. Topics addressed by the modifications include definitions, discrimination in health insurance based on genetic information, and prohibitions for requesting and requiring genetic a genetic test with exceptions for research if conducted in compliance with the Common Rule and certain criteria are met. Approved by the Governor on 5/10/2010.

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.

New Jersey Coverage and reimbursement Introduced

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

Massachusetts Neonatal sequencing Introduced

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

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.

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.

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...

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).

New Jersey Coverage and reimbursement Introduced

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

Kansas Neonatal sequencing Introduced

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

West Virginia Genetic Data & Law Enforcement Introduced

Relating to DNA data maintained for law enforcement purposes.

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 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.

Texas Genetic Data & Law Enforcement Passed House

Relating to postconviction forensic DNA testing.

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.

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...

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.

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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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