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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
New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

Texas Genetic data storage/privacy/sharing (industry) Approved

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

Pennsylvania Coverage and reimbursement Approved

An Act amending the act of May 17, 1921 (P.L.682, No.284), known as The Insurance Company Law of 1921, in casualty insurance, further providing for coverage for mammographic examinations and diagnost...

Montana Neonatal sequencing Approved

Revise laws related to collection of genetic material for newborn screenings.

California Other Topics Died

A certified peace officer must have their certificate suspended or revoked, and an applicant must have their application for a certificate denied, upon a determination that the peace officer or applicant meets certain conditions. Requires the development of a definition of �serious misconduct," which will serve as the criteria to be considered for suspension or revocation of a certificate. This definition must include certain examples of serious misconduct such as bias in the performance of a peace officer or custodial officer�s duties, including, but not limited to, verbal statements, writings, online posts, recordings, and gestures involving prejudice or discrimination against a person on the basis of genetic information. Carries over to 2022.

Hawaii Health Insurance Coverage Died

Requires accident and health or sickness insurers to provide coverage for genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill repeals an exemption for disability insurance under the state genetic nondiscrimination law and amends the definition of genetic information used in the health_insurance_nondiscrimination law. Measure failed.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

New Hampshire Privacy Died

Declares that an individual's genetic information and DNA sample are the property of the individual. Committee Report: Referred to Interim Study, 05/05/2016.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

New York Privacy Died

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. Died.

Texas Other Topics Died

Proposes a Constitutional Amendment providing for the recognition of equal rights of all people. States that equality under the law may not be denied or abridged based on numerous factors, including genetic information. Died.

Wisconsin Employment Nondiscrimination Died

Permits the Department of Workforce Development (DWD) or a person who has been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court to recover compensatory and punitive damages caused by the act of discrimination or unfair honesty or genetic testing after the completion of all administrative proceedings before DWD and the Labor and Industry Review Commission concerning the violation. Failed to pass pursuant to Senate Joint Resolution 1.

Alaska Privacy Died

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. Died.

Florida Neonatal sequencing Died

Children?s Medical Services Program; Deleting a requirement that the Department of Health consult with the Department of Education before prescribing certain newborn testing and screening requirement...

Iowa Use of Residual Newborn Screening Specimens Died

Requires the Center for Congenital and Inherited Disorders to adopt rules to prohibit the retention and ensure proper disposal of residual newborn screening specimens. The Center must incinerate any residual specimens being stored before the effective date of the bill. Died.

Maryland Health Insurance Nondiscrimination Died

Establishing Healthy Maryland as a public corporation and a unit of State government to provide comprehensive universal health coverage for every Maryland resident. The Health Maryland Board must develop rules to promote nondiscrimination with respect to genetic information among members and providers. Died.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

New Jersey Other Topics Died

Prohibits discrimination in health programs or activities based on certain factors, including genetic information. Died.

New York Employment Nondiscrimination Died

Prohibits clients and modeling agencies from subjecting a model to harassment based on various characteristics, including predisposing genetic characteristics, where such harassment has the purpose or effect of unreasonably interfering with an individual's provision of modeling services by creating an intimidating, hostile, or offensive environment. Died.

Rhode Island Privacy Died

Enacts the Consumer Protection privacy Act. Establishes consumer protections pertaining to the collection and use of personal information, including an individual's DNA, by businesses. Died.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

South Dakota Health Insurance Coverage Died

Every policy of group or individual health insurance, each service or indemnity-type contract issued by a nonprofit medical or surgical service plan corporation and each health maintenance contract that covers a female, that is delivered, issued for delivery, or renewed in South Dakota, and that provides coverage for occult breast cancer screening must provide additional benefits for (1) comprehensive ultrasound screening if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if a woman is believed to be at an increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's physician or advanced practice registered nurse; and (2) magnetic resonance imaging in accordance with guidelines established by the American Cancer Society or the American College of Radiology or if a woman is believed to be at an increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's physician or advanced practice registered nurse. Died.

Washington Other Topics Died

Creates a study committee on human genome editing. Died.

Connecticut Other Topics Died

Requires a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of disease. Died.

Illinois Employment Nondiscrimination, Privacy Died

This bill amends the Genetic Information privacy Act and makes technical changes to the section of the law pertaining to employers. Measure failed.

Maryland Other Topics Died

Creates the task force on pharmacogenomics to examine questions related to pharmacogenomics, including how the State can adopt genomic testing as the standard of care for patients. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill prohibits group health benefit plans from imposing pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

New Jersey Employment Nondiscrimination Died

This bill prohibits employers from (1) seeking to obtain or use a genetic test or genetic information, (2) requiring a genetic test or genetic information, (3) accessing or requesting or requiring consent to access genetic information, (4) requesting or requiring a genetic test from an individual or family member, or (5) inquiring about whether an individual or family member has taken or refused to take a genetic test. Civil penalties are set forth for violations. Measure failed.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

Utah Privacy Died

Provides consumers the right to access, correct, and delete certain personal data. Gives consumers the right to opt out of the collection and use of personal data for certain purposes. Requires certain businesses that control and process personal data of consumers to: safeguard personal data; provide clear information to consumers regarding how the consumer's personal data are used; accept consumer requests to exercise the consumer's rights under this bill; comply with a consumer's request to exercise the consumer's rights under this bill; and maintain data protection assessments. Creates a process for a consumer to submit requests and appeal a business's decision regarding the business's processing of the consumer's personal data. Allows the Division of Consumer Protection to accept and investigate consumer complaints regarding the processing of personal data. Creates a right for a consumer to know what personal information a business collects, how the business uses the personal information, and whether the business sells the personal information. Allows a consumer to require a business to delete personal information, with
exceptions, and direct a business that sells personal information to stop selling the consumer's personal information. 3/5/2021 Senate Filed. Died.

Wisconsin Privacy Died

Requires controllers of consumers' personal data to provide a consumer with copies of the consumer's personal data processed by the controller. Personal data includes genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

California Use of Residual Newborn Screening Specimens Died

This bill amends existing law pertaining to pregnancy blood samples. Existing law provides for the use of samples for approved research projects and establishes confidentiality and privacy protections with regard to samples and related personal information. This bill renames the term "pregnancy" blood samples by referring to them as "newborn" blood samples. Measure failed.

Florida Privacy Died

Enacts the Parents Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor 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. Died.

Kentucky Privacy Died

Requires certain information holders to encrypt personally identifiable data, which is defined to include a genetic print. Information holders must report a breach of personally identifiable information to consumers. Died.

Maryland Privacy Died

Establishes the Healthy Maryland Program. Requires the Board to establish requirements and standards to consistent with state nondiscrimination laws, including those pertaining to genetic information. Participating providers may not refuse to provide health care services on the basis of genetic information. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Missouri Research, Use of Residual Newborn Screening Specimens Died

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.

New Mexico Health Insurance Coverage Died

An individual or group health insurance policy, health care plan or certificate of health insurance that is delivered or issued for delivery in New Mexico must provide certain benefits that have, in effect, a rating of "A" or "B" in the current recommendations of the United States preventive services task force, for various services, including genetic counseling and evaluation for breast cancer BRCA-gene testing for women whose family histories are associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes. Died in Committee.

Maryland Other Topics Died

Alters the definition of "practice pharmacy" to include the ordering and administering of certain laboratory tests. Requires the State Board of Pharmacy, on or before January 1, 2022, to adopt regulations authorizing a pharmacist to order and administer laboratory tests, without a written, oral or electronically transmitted prescription from an authorized prescriber that measure biomarkers, including deoxyribonucleic acid.

Minnesota Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill specifies that newborn screening activities are subject to state law on the collection, storage, use, and dissemination of genetic information. A new statute section also is created on the treatment of biological specimens and health data held by the health department and health boards. The new statute section allows the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection. Died.

Montana Health Insurance Nondiscrimination Died

Amends state health insurance law by deleting provision related to restrictions on pre-existing condition exclusions, including those based on genetic information. The new law would prohibit any pre-existing condition exclusions. Died.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on an insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Requires every personal information recipient to protect the security and integrity of all personal information in their custody from unauthorized access or unauthorized use. Places strict liability on companies where breaches of security allow for personal information to be compromised. Personal information is defined to include biometric information such as DNA. Died.

Tennessee Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

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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