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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 ascending Summary
Hawaii Employment Nondiscrimination, Other Topics Pending

Prohibits discrimination in employment and public accomodation based on an individual's invasive medical test status. Invasive medical test status is defined to include a medical test or screening that requires a sample of an individual's genetic material. Carries over to 2022 session.

Oklahoma Privacy Pending

Creates the Oklahoma Computer Data privacy Act, which applies to certain businesses that collect consumers' personal information, including biometric information. Provides guidelines for the use of personal information in research. Provides consumers the right to request disclosure of certain information; the right to request the deletion of their information; the right to request and receive a disclosure of personal information sold or disclosed; and the right to opt in and out of the sale of their personal information. Biometric information is defined to include DNA. 3/22/2021 Second Reading in Senate Judiciary. 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.

New York Privacy Pending

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. Biometric information is defined to include DNA. Carries over to 2022.

Massachusetts Health Insurance Coverage Pending

Requires certain insurers to provide benefits on a nondiscriminatory basis for the diagnosis and treatment of Alfi�s syndrome in individuals. Diagnosis of Alfi's Syndrome includes genetic testing. Carries over to 2022.

New York Privacy Pending

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. Carries over to 2022.

Massachusetts Privacy Pending

Amends statute to protect biometric information under the security breach law. Adds biometric indicator or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including genetic information, to the scope of information covered under the law. 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.

Oklahoma Other Topics, Privacy Pending

Requires a practitioner to offer to administer a pharmacogenomic test to a patient prior to the prescription of any psychotropic drug. The practitioner is required by the measure to inform the patient that pharmacogenomic tests have not been approved by the Food and Drug Administration. The practitioner must obtain the patient�s informed consent prior to ordering a pharmacogenomic test and must provide an estimate to the patient if the practitioner is aware of the cost. 2/2/2021 Second Reading. Referred to Senate Health and Human Services. 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.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

Massachusetts Health Insurance Coverage Pending

Requires certain insurers to provide coverage for screening breast ultrasound or screening breast magnetic resonance imaging examination if the patient has additional risk factors for breast cancer including, but not limited to, family history and positive genetic testing. Carries over to 2022.

Iowa Health Insurance Nondiscrimination Pending

A participating healthcare provider or participating care coordinators may not refuse to provide health care services to a member of the Health Iowa Program on the basis of various characteristics, including genetic information. The board for the Health Iowa Program must adopt rules to promote nondiscrimination with respect to members and health care providers on the basis of various factors, including genetic information. 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.

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.

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.

Colorado Other Topics Enacted

Prohibits direct primary health care providers from discriminating in the selection of patients on the basis of genetic information and other protected classes. 4/24/2017 Signed Act.

Maryland Other Topics, Privacy Enacted

This bill establishes that a certain forensic genetic genealogical DNA analysis and search may not be initiated without certifying certain information before a court and obtaining a certain authorization from the court; prohibits certain biological samples subjected to certain forensic genetic genealogical profile analysis to be used to determine certain information about a certain donor; requires the Department of Public Safety and Correctional Services to produce a certain annual report; etc.

Arkansas Health Insurance Coverage Enacted

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors. 3/29/2017 Enacted.

Kansas Health Insurance Nondiscrimination Enacted

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved March 22, 2010.

New York Research Enacted

Amends the public health law, in relation to authorizing human research in compliance with federal law. 9/13/2019 Signed by the Governor.

Delaware Privacy Enacted

Establishes protections for personal information, including a deoxyribonucleic profiles, owned, maintained, or licensed by businesses in the state. Businesses must implement and maintain reasonable procedures and practices to prevent the unauthorized access to or acquisition, use, modification, disclosure, or destruction of personal information collected or maintained in the regular course of business. 8/17/2017 Signed by the Governor. Effective 4/14/2018.

Minnesota Other Topics Enacted

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of section 13.386 of the statutes. Signed by the Governor on May 18, 2013.

Washington Privacy Enacted

Modifies the state privacy law pertaining to biometric information by adding DNA to the definition of biometric identifiers. Provides an exception for law enforcement agencies. 6/27/2017 Signed by the Governor. Effective 7/23/2017.

California Health Insurance Nondiscrimination Enacted

A stop-loss carrier must offer coverage to all employees and dependents of employees of a small employer to which it issues a stop-loss insurance policy and may not exclude any employee or dependent on the basis of an actual or expected health status-related factor, including genetic information. Approved by the Governor October 1, 2013.

Louisiana Other Lines of Insurance Nondiscrimination Enacted

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. 6/11/21 Signed by the Governor. Becomes Act No. 242. Effective August 1, 2021.

North Dakota Use of Residual Newborn Screening Specimens Enacted

This bill amends the statute that allows the health council to authorize the use of newborn metabolic screening tests for legitimate research purposes by broadening the term "newborn metabolic screening tests" to include "newborn metabolic and genetic disease screening tests." Signed by the Governor April 26, 2011.

California Other Topics Enacted

States that certain peace officer or custodial officer personnel records and records maintained by a state or local agency are not confidential and are should be made available for public inspection. Such records include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct including, but not limited to, verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the based on various characteristics, including genetic information. 10/5/21 Approved by the Governor. Effective 1/1/2022.

Maryland Privacy Enacted

Amends the Maryland Personal Information Protection Act. Requires a business to inform an employee or a former employee in the event of a breach of a security system that contains personal information, including a genetic print. A business subject to HIPAA is considered to be in compliance with the law. 5/4/2017 Approved by the Governor. Chapter 518. Effective January 1, 2018.

Oregon Health Insurance Nondiscrimination Enacted

Aligns Oregon health insurance law with changes in federal law and renumbers sections of Oregon law pertaining pre-existing condition, which are defined not to include genetic information in the absence of a diagnosis of the condition related to such information. 7/29/13 Signed by the Governor.

Illinois Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

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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