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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
West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

Illinois Privacy Died

Amends the Personal Information Protection Act. Provides that individuals and entities have intellectual property rights in their digital identity assets. Provides for the payment of royalties to individuals and entities for access, for the purpose of commercial advertising, to their digital assets. Digital assets include, but are not limited to, information accumulated regarding an individual's or entity's personal information. Personal information includes medical history such as RNA and DNA profiles and genetic history. Carries over to 2022 session.

Connecticut Other Topics Died

Creates a penalty for the unauthorized public photography of an individual with a genetic or medical condition. Died.

Illinois Privacy Died

Requires health insurance providers to protect health information related to sensitive services. A 2016 House Amendment would define sensitive services to include genetic testing. Died.

Maryland Other Topics Died

Repeals a prohibition on advertising for or soliciting business related to direct to consumer genetic testing in the State. Died.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Mississippi Privacy Died

Creates the parental authority act. Parental rights include the he right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (H) Died In Committee.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New York Health Insurance Coverage Died

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

Oklahoma Employment Nondiscrimination Died

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. Measure failed.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

California Health Insurance Coverage Died

Prohibits a health care service plan contract or a health insurance policy that covers prescription drug benefits from denying or otherwise limiting coverage of a genetically targeted drug for the treatment of Duchenne muscular dystrophy under specified circumstances. Died.

Florida Privacy Died

Creates the Florida privacy Protection Act. Requires collectors to provide notice to consumers about data collection and selling practices. Provides consumers right to request data be disclosed, deleted, or corrected and to opt-in or opt-out of sale or sharing of such data. Provides nondiscrimination measures, methods for requesting data and opting-in or opting-out of sale or sharing of such data, private cause of action, enforcement, and jurisdiction. Personal information is defined to include biometric information such as DNA. 4/30/21 Died in returning messages.

Louisiana Employment Nondiscrimination Died

This bill changes the person in charge of promulgating regulations for genetic monitoring from the executive director of the Louisiana Workforce Commission to the chairman of the Louisiana Commission on Human Rights. Measure failed.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

Maryland Other Topics Died

Requires the Maryland Department of Health to do the following: (1) by January 1, 2023, develop gene sequence and customer screening guidelines for gene synthesis providers and manufacturers of gene synthesis equipment that include certain requirements; (2) develop a process to certify that gene synthesis providers and manufacturers of gene synthesis equipment are in compliance with the guidelines requiring, on or after January 1, 2024, the Department to certify certain gene synthesis providers and equipment manufacturers. Gene synthesis provider does not include a research scientist making gene synthesis products for the research scientist's own use or for use by another research scientist. In the House - Withdrawn by Sponsor. Died.

Massachusetts Privacy Died

Specifies when authorization to disclose health care information is required. Health care is defined to include genetic information. As of June 6, 2014, accompanied by a study order (see H4147).

Minnesota Privacy Died

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

New Hampshire Privacy Died

This bill restricts the collection, storage, and sharing of student assessment data by the United States Department of Education and the New Hampshire department of education. Student assessment data includes biometric information, which is defined to include DNA. As of October 30, 2014, Interim Study Report: Not Recommended for Legislation in 2014 (Vote 15-0).

New York Use of Residual Newborn Screening Specimens Died

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

Texas Privacy Died

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. Died.

Wisconsin Employment Nondiscrimination Died

This bill allows a person discriminated against or the department of workforce development under the state fair employment practices law to bring an action in circuit court. Measure failed.

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 Employment Nondiscrimination Died

This bill prohibits appointments, terminations, assignments, and maintenance of status, compensation, privileges and other terms and conditions of employment in the state personnel system based on genetic information. Measure failed.

Indiana Health Insurance Nondiscrimination Died

Specifies that a state employee health plan, a policy of accident and sickness insurance, and a health maintenance organization contract must provide for availability, renewability, premium rating, and coverage without regard to health status, including genetic information. Died.

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

Massachusetts Other Topics Died

Prohibits any person whose business includes sponsoring, guaranteeing or granting funds or engaging in investment transactions from discriminating against any person in the sponsoring, guaranteeing or granting of funds or making available such funds, because of various factors, including genetic information. 2/27/2020 Accompanied study order. Died.

Missouri Employment Nondiscrimination Died

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

New Jersey Employment Nondiscrimination Died

Creates the State Anti-Harassment and Workplace Discrimination Act. Declares that it is an unlawful employment practice and unlawful discrimination, for any person, whether an employee or applicant for employment, or intern or volunteer, in any State agency or Gubernatorial Transition Office, or person doing business with the State to discriminate against or harass an employee or applicant for employment, or intern or volunteer, based upon certain protected categories, genetic information. Died.

New York Other Topics Died

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. Died.

Oregon Health Insurance Nondiscrimination Died

Creates new provisions related to statewide coverage of health care. Renumbers sections of existing that which define pre-existing conditions, which does not include genetic information in the absence of a diagnosis of a condition related to the information. Died.

Virginia Employment Nondiscrimination Died

Prohibits discrimination in apprenticeships based on various factors, including genetic information. Died.

Connecticut Health Insurance Coverage Died

Requires health_insurance_coverage for genetic cystic fibrosis screenings for women. Died.

Hawaii Health Insurance Coverage Died

Requires all individual accident and health or sickness insurance policies, all individual and group hospital and medical service corporation contracts, and all group or blanket disability policies that provide coverage for reproductive health to include certain services in reproductive health service coverage. The services listed include genetic screening and counseling related to BRCA1 and BRCA2 genetic mutations. Died.

Maine Privacy Died

Establishes annual registration of data brokers. Requires data brokers to develop, implement and maintain a comprehensive information security program to protect personally identifiable information. Personally identifiable information includes genetic identifiers. Ought Not to Pass Pursuant To Joint Rule 310, Jun 2, 2021.

Connecticut Employment Nondiscrimination Died

This bill amends the state genetic nondiscrimination law for employment by creating an exemption for state or local law enforcement, the department of public safety and the division of scientific services that allows those entities to request or require employees to provide genetic information for the purpose of detecting contamination of samples examined by the division of scientific services. Measure failed.

Idaho Other Topics Died

If a firefighter is diagnosed with breast cancer within 5 years of employment if diagnosed before the age of 40 and if the cancer was not revealed during an initial employment medical screening examination or during any subsequent medical review, the disease shall be rebuttably presumed to be proximately caused by the firefighter's employment as a firefighter, regardless of whether or not the firefighter has a genetic predisposition to breast cancer. Died.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill amends provisions of law that relate to the use of genetic tests and genetic information by an insurer, nonprofit health service plan, or health maintenance organization. The bill also amends provisions related to the use of genetic information in disability insurance, longterm care insurance, or life insurance. Measure failed.

Massachusetts Health Insurance Coverage, Other Topics Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

New Hampshire Privacy Died

Prohibits private entities from requiring an individual to disclose or provide biometric data, including DNA, as a condition of doing business with, engaging in any business activity or relationship with, or obtaining services from that private entity, unless the good, service, or activity provided by the private entity cannot be provided without the collection of biometric information from an individual. A private entity may not collect, use, or retain the biometric information of an individual without the individual's consent and shall not condition access to its good, service, or activity on the provision of biometric data. Died.

New York Health Insurance Coverage Died

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. Died.

North Carolina Health Insurance Nondiscrimination Died

Prohibits an association health plan or sponsoring association from conditioning eligibility for coverage, including continuing eligibility for coverage, on health-status factors such as genetic information. Died.

Utah Privacy Died

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. Died.

Wisconsin Health Insurance Nondiscrimination Died

In selecting patients with whom to enter into a direct primary care agreement, a health care provider may not discriminate on the basis of genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Arizona Other Topics Died

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Florida Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers and long-term care insurers from basing decisions on genetic information. Prohibits these insurers from taking certain actions related to genetic information for any insurance purpose. Died.

Kentucky Privacy Died

Any agency that collects, maintains, or stores personal information that determines or is notified of a security breach relating to personal information collected, maintained, or stored by the agency or by a nonaffiliated third party on behalf of the agency must take specified actions. Personal information includes a genetic print or image. Agencies covered under the law include the executive branch of state government, local government and public educational institutions. Died.

Maryland Privacy Died

Enacts the Online Consumer Protection Act. Defines biometric information to include an individual's DNA. 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