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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 Summary Sort descending
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.

Michigan Privacy Statute

A physician or individual to whom a physician has delegated authority must obtain informed written consent to order a pre-symptomatic or predictive genetic test. Required contents of the informed consent form are specified, and the department of community health with others must develop a model consent form, which, if used, bars the test subject from bringing any civil action for damages based on failure to obtain consent. The public health department may investigate activities thought to be in violation of the law and report its findings by to the appropriate disciplinary subcommittee.

Wyoming Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A policy of group or blanket disability insurance or health benefit plan covering small employers may not treat genetic information as a pre-existing condition in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. These entities also may not deny eligibility, or adjust premium or contribution rates based on genetic testing information of an individual or family member or request or require predictive genetic testing information about an individual or family member except as needed for diagnosis, treatment, or payment purposes.

Vermont Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A policy of insurance may not be underwritten or conditioned on a requirement to undergo genetic testing or the results of genetic testing. Civil and criminal penalties are set forth for violations.

Missouri Use of Residual Newborn Screening Specimens Statute

A residual newborn screening specimen is retained for five years after initial submission to the department. After five years specimens are destroyed. Unless otherwise directed, a biological specimen may be released for anonymous scientific study. At the time of collection, the parent or legal guardian of the child from whom a biological specimen was obtained may direct the department to: (1) Return a biological specimen that remains after all screening tests have been performed; (2) Destroy a biological specimen in a scientifically acceptable manner after all screening tests required have been performed; or (3) Store a biological specimen but not release the biological specimen for anonymous scientific study. A biological specimen released for anonymous study may not contain information that may be used to determine the identity of the donor. The department has authority over the use, retention, and disposal of biological specimens and related information collected in connection with newborn screening tests. The use of such specimens and related information is for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for the use of such specimens for public health research and preparing and supplying specimens for research proposals approved by the department.

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.

California Health Insurance Nondiscrimination Enacted

A stop-loss carrier must offer coverage to all employees and dependents of employees of a small employer to which it issues a stop-loss insurance policy and may not exclude any employee or dependent on the basis of an actual or expected health status-related factor, including genetic information. Approved by the Governor October 1, 2013.

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.

New York Other Topics Enacted

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. 4/20/2017 Signed by the Governor Chapter 58.

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. TNC drivers must comply with the anti-discrimination law. Died.

New York Privacy Died

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. Died.

California Privacy, Research Pending

Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. Carries over to 2022.

California Privacy, Research Enacted

Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfers the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. 10/8/21 Approved by the Governor. Effective immediately.

Arkansas Health Insurance Coverage Enacted

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors. 3/29/2017 Enacted.

Arkansas Health Insurance Coverage Statute

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

Arizona Health Insurance Nondiscrimination Statute

Accountable health plans may not (1) deny, limit or condition coverage or benefits based on health status-related factors, including genetic information or (2) impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Wisconsin Employment Nondiscrimination Died

Addresses actions in circuit court alleging discrimination in employment, unfair honesty testing, or unfair genetic testing. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

Wisconsin Employment Nondiscrimination Died

Addresses actions in circuit court alleging discrimination in employment, unfair honesty testing, or unfair genetic testing. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

Massachusetts Privacy Died

Adds biometric indicators to the state data security protection law. Biometric indicator is defined as any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry. Died.

New Hampshire Privacy Died

Adds biometric information to the Consumer Protection Act. 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.

Massachusetts Employment Nondiscrimination Died

Adds new section to unlawful employment practices statute. 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 genetic information and other factors. 11/16/2020 Accompanied a study order, see S2953. Died.

Illinois Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

Connecticut Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements if a woman is believed to be at 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. June 2, 2016 Approved. Effective January 1, 2017.

Connecticut Health Insurance Coverage Died

Adds tomosynthesis to health_insurance_coverage requirements if a woman is believed to be at 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.

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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