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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 Sort descending Primary Link Topic(s) Bill Status Summary
Nebraska Privacy Statute

A physician or an individual to whom the physician has delegated authority to perform a selected act, task, or function may not order a predictive genetic test without prior written informed consent and in the manner specified with some exceptions such as newborn screening. The health department must develop a model informed consent form that, if used, bars the person tested from bringing any civil action on the basis that consent was not obtained.

Nebraska Health Insurance Nondiscrimination Statute

Under the Small Employer Health Insurance Availability Act, health status-related factor is defined to include genetic information and pre-existing condition is defined to exclude genetic information in the absence of a diagnosis.

Nebraska Health Insurance Nondiscrimination Statute

A health benefit plan may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health carrier may not establish rules for eligibility and continued eligibility of any individual to enroll under the terms of the health benefit plan based on a health status-related factor, including genetic information.

Nebraska Employment Nondiscrimination Statute

In order for a company to be eligible for the wage benefit credit or the investment tax credit under the Invest Nebraska Act, the company must file an application for an agreement with the board, which must contain a copy of the written policy of the company prohibiting the company, as required by law, from requiring as a condition of employment or promotion at the project that an employee or an individual applying for employment at the project submit to a genetic test or provide genetic information outside of the scope of normal blood testing.

Nebraska Privacy Died

This bill amends section 71-551 of the statutes on genetic testing. Proposed changes address the types of genetic tests covered under law and and consent requirements. Measure failed.

Nebraska Health Insurance Nondiscrimination Statute

Any hospital, medical, or surgical expense-incurred policy or certificate and self-funded employee benefit plan to the extent not preempted by federal law may not require a covered person or his or her dependent or an asymptomatic applicant for coverage or his or her asymptomatic dependent to undergo any genetic test before issuing, renewing, or continuing the policy or certificate. This does prohibit requiring an applicant for coverage to answer questions concerning family history.

Nebraska Health Insurance Coverage Died

Requires individual or group sickness and accident insurance policies or subscriber contracts; hospital, medical, or surgical expense-incurred policies; and any self-funded employee benefit plan to the extent not preempted by federal law shall to provide coverage for screening digital breast tomosynthesis and digital magnetic resonance imaging if a woman 40 or older has positive genetic testing. Died.

Nevada Privacy, Research Statute

It is unlawful to obtain any genetic information of a person without informed consent with some exceptions, including for use in a study where the identities of the persons from whom the genetic information is obtained are not disclosed to the person conducting the study. It is unlawful to retain genetic information that identifies a person without first obtaining the informed consent with some exceptions. Except as otherwise provided, a person who obtains the genetic information for use in a study must destroy that information upon completion of the study or withdrawal of the person from the study. Criminal penalties and a right to civil action are established for violations.

Nevada Research Died

This bill prescribes the requirements for surrogate decision makers to give informed consent for certain human subject research. Measure failed.

Nevada Health Insurance Nondiscrimination Statute

A health maintenance organization, a carrier serving small employers, a corporation that provides health insurance, individual health insurers and group health insurers may not (1) require an insured person or family member to take a genetic test or disclose whether one has been taken or (2) determine the rates or any other aspect of the coverage or benefits based on genetic information or whether the insured person or member of his family has taken a genetic test. These entities may not establish rules of eligibility based on a health status-related factor, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. The provisions to not apply to any of the above entities in terms of the issuance of a policy of health insurance that provides coverage for long-term care or disability income. Insurers or organizations that provide health coverage pursuant to sections 689A, 689B, 689C, 695A, 695B, 695C, 695D, and 695F must comply with the federal law, the Genetic Information Nondiscrimination Act.

Nevada Health Insurance Nondiscrimination Died

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Measure failed.

Nevada Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Enacted

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Signed by the Governor May 29, 2009.

Nevada Health Insurance Coverage Died

Requires the State Plan for Medicaid to pay the nonfederal share of expenditures incurred to perform genetic testing to detect birth defects in the fetus of a pregnant woman who is 40 years of age or older. Died.

Nevada Employment Nondiscrimination Enacted

Adds genetic information to the list of categories included in an apprenticeship agreement for which discrimination is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information. June 5, 2019 Approved by the Governor. Chapter 377.

Nevada Health Insurance Coverage Enacted

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. 5/27/2021 Approved by the Governor. Effective 1/1/2022.

Nevada Health Insurance Coverage Statute

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required.

Nevada Employment Nondiscrimination Statute

genetic_discrimination with regard to apprenticeship agreements is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information.

Nevada Employment Nondiscrimination Statute

It is an unlawful employment practice for an employer, a labor organization or an employment agency to (1) ask or encourage a prospective or current employee or member of the labor organization to submit to a genetic test, (2) require or administer a genetic test to a person as a condition of employment or membership, or (3) deny, alter the terms, conditions or privileges of, or terminate employment or membership based on genetic information.

New Hampshire Privacy Died

Prohibits the government from acquiring, retaining, collecting, or using personal information without express written consent with some exceptions such as if a warrant has been issued. Personal information includes DNA/RNA. Died.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

New Hampshire Privacy Died

Adds biometric information to the Consumer Protection Act. Died.

New Hampshire Use of Residual Newborn Screening Specimens Statute

Samples may not be used for other research or DNA testing purposes unless authorized by the parent or guardian.

New Hampshire Privacy Died

When an individual consents to receive assistance from a health or social service agency in the state, the consent given to the initial health or social service agency to use the individual's personal information may not be transferred to or retained by any other health or social service agency, network, or entity. No health or social service agency in the state may require a individual's consent to share personal information with another health or social service agency in the state or another state as a prerequisite for such individual to receive services from such health or social service agency, including consent to share details regarding which health or social service agency the individual has received help from in the past and associated information related to that interaction. A health or social service agency must explicitly and in writing inform any individual seeking such assistance that lack of consent will not affect the individual's ability to receive health or social services from the agency and that the individual will not be otherwise penalized. Personal information is defined to include DNA. Hearing on 2/08/2021. Carries over to 2022.

New Hampshire Privacy Statute

No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute.

New Hampshire Research Died

The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table.

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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