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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
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.

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.

Massachusetts Other Topics Pending

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

North Carolina Privacy Pending

Creates the Consumer Data privacy Act of North Carolina. Prohibits data controllers from processing sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of sensitive data concerning a known child, without processing such data in accordance with the federal Children's Online privacy Protection Act. 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.

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.

New York Health Insurance Coverage Pending

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk thereof. Carries over to 2022.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Carries over to 2022.

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.

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.

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.

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).

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.

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...

California Privacy Enacted

Amends existing law to protect the privacy and security of computerized data, including personal information, owned or licensed by an agency. This bill adds genetic data to the scope of personal information under the law. Genetic data is defined as any data that results from the analysis of a biological sample of an individual, or from another source enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from analysis of the biological sample or other source, and any information extrapolated, derived, or inferred therefrom. 10/5/21 Approved by the Governor. Effective 1/1/2022.

Maryland Other Lines of Insurance Nondiscrimination Enacted

This bill prohibits long-term care insurance carriers from requesting or requiring a genetic test to deny or limit coverage or charge a higher rate for the same coverage. These entities may not use the results of a genetic test, genetic information, or a request for genetic services to deny or limit coverage or charge a higher rate for the same coverage except that genetic information or the results of a genetic test may be used for such purposes if based on sound actuarial principles. Approved by the Governor May 22, 2008.

Oregon Health Insurance Nondiscrimination, Privacy Enacted

This bill amends the state genetic privacy law by allowing health insurers to retain or disclose genetic information without written authorization if (1) the retention is for treatment, payment or health care operations by the insurer; and (2) the disclosure is in accordance with ORS 746.607 (3). Signed by the Governor July 17, 2007.

Illinois Employment Nondiscrimination, Privacy Enacted

This bill amends the Genetic Information privacy Act. The bill adds and amends definitions under the law, makes changes to the employment provisions, adds requirements to be consistent with federal laws such as GINA, and further specifies prohibited actions by covered entities. Monetary penalties are increased, and a private right of action is afforded to any person alleging a violation of the law. The bill allows local governments to enact genetic privacy measures equal to or greater than the protections provided under state law. Approved by the Governor August 26, 2008.

New Hampshire Privacy Enacted

The introduced version of the bill sought to protect confidential and sensitive information such as genetic testing information. The bill has been amended to establish a committee to study the use and regulation of biometric information. Signed by the Governor on 5/15/2018. Effective 5/15/ 2018.

Colorado Health Insurance Coverage Enacted

This bill amends existing statutes pertaining to mammography coverage for persons with a predisposition to breast cancer by amending provisions related to copayments and deductibles and the frequency of mammography coverage requirements (breast cancer screening with mammography required annually.) Signed by the Governor on May 13, 2013.

Maryland Health Insurance Nondiscrimination Enacted

Prohibits health insurers, health maintenance organizations, nonprofit health insurance plan or any person or organization that provides health benefits plans from excluding or limiting certain benefits or denying certain coverage based on a health-status related factor, including genetic information. Enacted without Governor's signature 5/8/2020. Effective upon enactment.

Texas Privacy Enacted

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization. 6/9/2017 Signed by the Governor.

Arizona Privacy Enacted

Requires that genetic testing information be released only as authorized by state or federal law, including the Health Insurance Portability and Accountability Act privacy standards. Permits the release of genetic testing information to a health care provider who is providing care to the person tested and the health care provider's agent or employee. Allows a legal representative of a clinical laboratory that is in possession of the medical record to receive the genetic test and information derived from the genetic test when the laboratory is obtaining legal advice. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results. Signed by the Governor on May 22, 2019.

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 by the Governor April 15, 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.

North Carolina Health Insurance Nondiscrimination Enacted

A sponsoring association of an employee welfare benefit program may not condition eligibility for coverage, including continuing eligibility for coverage, on health status related factors such as genetic information. 8/26/2019 Became law without signature.

Delaware Research, Use of Residual Newborn Screening Specimens Enacted

Prohibits utilizing newborn screening stored blood specimens or stored data without parental consent, except for population based studies in which all identifying information is removed. Blood spots may be used within the Division of Public Health for quality assurance or performance improvement activities, including pilot studies when a new disorder is being considered for addition to the panel, or may be used by Division of Public Health for any other purpose authorized by law. Jul 15, 2015 - Signed by Governor.

Minnesota Privacy Enacted

Requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act. March 21, 2013 Approved by the Governor.

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.

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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