NHGRI logo

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 York Health Insurance Coverage Pending

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. 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.

Massachusetts Privacy Pending

Establishes protections relative to the processing of personal data and the free movement of personal data. Prohibits the processing of genetic data or biometric data for the purpose of uniquely identifying a natural person with certain exceptions. Carries over to 2022.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

Washington Health Insurance Coverage Pending

Requires an osteopathic physician and, physician, physician's assistant and advanced registered nurse practitioner to refer a person who is 18 years of age or younger to a children's specialty health care facility that can provide specialized diagnostic services, including genetic testing, unless the person is currently receiving care in such a facility, if the person has experienced any neurological or physical symptoms, including but not limited to seizures or missing developmental milestones. Requires a health carrier must provide coverage for genetic testing including up to a full genome panel as determined by the ordering practitioner to identify potential causes of seizures, neurological symptoms, or other physical symptoms as determined by the health care provider in persons who are 18 years of age or younger. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Minnesota Lab Developed Tests Pending

Direct-to-consumer genetic testing companies required to provide disclosure notices and obtain consent.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. 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.

Washington Privacy Pending

Creates a charter of people's personal data rights. Establishes the rights of an individual with regard to personal information. Prohibits a person or legal entity processing captured personal information in a manner that discriminates against consumer on the basis of various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

California Neonatal sequencing Pending

Newborn screening: genetic diseases: blood samples collected.

New York Privacy Pending

Enacts the NY privacy act to require companies to disclose their methods of de-identifying personal information such as biometric information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared. Biometric information is defined to include DNA. Carries over to 2022.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers in the group market may not establish rules for eligibility or continued eligibility based on genetic information or impose preexisting condition exclusions based on genetic information in the absence of a diagnosis.

Idaho Employment Nondiscrimination, Privacy Statute

An employer may not (1) access or otherwise take into account private genetic information, (2) request or require consent to a release of private genetic information, (3) request or require a genetic test, or (4) inquire about taking or refusal to take a genetic test in connection with a hiring, promotion, retention or other related decision. An exception is made under certain circumstances for an order compelling disclosure of private genetic information.

Missouri Privacy, Research Statute

This section of the law is applicable to all insurance companies. A person who creates, stores, receives or furnishes genetic information must hold such information as confidential medical records and must obtain written authorization to disclose genetic information. Exceptions include statistical data compiled without reference to the identity of an individual, health research conducted in accordance with the provisions of the federal Common Rule, and health research using medical archives or databases in which the identity of individuals is protected from disclosure by coding or encryption, or by removing all identities. The director of insurance has the authority to enforce these provisions.

South Carolina Health Insurance Nondiscrimination, Privacy Statute

An accident and health insurer providing hospital, medical and surgical, or major medical coverage on an expense incurred basis, providing a corporate health services plan, or providing a health care plan for health care services by a health maintenance organization may not (1) terminate, restrict, limit, or otherwise apply conditions to coverage or restrict the sale to an individual, (2) cancel or refuse to renew the coverage of an individual, (3) exclude an individual from coverage, (4) impose a waiting period, (5) impose a pre-existing condition exclusion; (6) require inclusion of a rider that excludes coverage for certain benefits and services, or (7) adjust premium contribution amounts or establish differential in premium rates for coverage based on genetic information or a request for genetic services. Additional provisions address consent to disclose genetic information and consent to perform genetic testing. An aggrieved individual may bring civil action. he penalties and enforcement provisions of subsections (A) and (B) are in addition to penalties and enforcement provisions of federal law, including those set forth in the Genetic Information Nondiscrimination Act of 2008.

California Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Disability insurers covering hospital, medical and surgical expenses may not fail or refuse to accept an application, fail or refuse to issue insurance, cancel or refuse to renew insurance, charge a higher rate or premium, offer or provide different terms, conditions or benefits, or place a limitation on coverage based on genetic characteristics that may be associated with disability in a person of that persons offspring. These insurers also may not seek information about a persons genetic characteristics for non-therapeutic purposes. Specific penalties are set forth for violations. Life and disability insurers may not discriminate based solely on the fact that the person to be insured carries a gene that may be associated with disability in that person or the persons offspring, but which causes no adverse effects in the carrier, including but not limited to Tay-Sachs trait, sickle cell trait, thalassemia trait, and X-linked hemophilia trait.

Maryland Health Insurance Nondiscrimination Statute

Insurers, nonprofit health service plans and health maintenance organizations, may seek verification from health care providers that offer wellness programs about health factors that make it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Health factors are defined to include genetic information.

New Mexico Health Insurance Nondiscrimination Statute

A health benefit plan that is offered by a carrier or an approved health plan offered to a small employer and plans subject to the Health Insurance Portability Act may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A group health plan and a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based a health status-related factor, including genetic information. A group health benefits plan or a health insurance issuer that offers group health_insurance_coverage in connection with a group health benefits plan from adjusting premiums or contribution amounts for the group covered under the plan on the basis of genetic information. Under the Small Group Rate and Renewability Act, provisions allowing a carrier to use health status in establishing the amount an employer may be charged for coverage under a group health plan exclude genetic information from the definition of health status.

Washington Privacy, Research Statute

A health care provider, an individual who assists a health care provider in the delivery of health care, or an agent and employee of a health care provider may not disclose health care information, including a patient's deoxyribonucleic acid and identified sequence of chemical base pairs, about a patient to any other person without the patient's written authorization. A health care provider may disclose health care information to researchers if the health care provider or health care facility obtains the informed consent for the use of the patient's health care information for research purposes.

Massachusetts Other Lines of Insurance Nondiscrimination Statute

An insurer, agent or broker authorized to issue life insurance policies, policies against disability from injury or disease or policies for long-term care may not practice unfair discrimination because of the results of a genetic test or the provision of genetic information or require an applicant to undergo a genetic test as a condition of issuance or renewal of a policy. Unfair discrimination involves discriminatory practices against persons unless such action is based on reliable information relating to the insureds mortality or morbidity and based on sound actuarial principles or actual or reasonably anticipated claim experience. These insurers may ask if an applicant has taken a genetic test.

Displaying 901 - 925 of 1160

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