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
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.

Ohio Health Insurance Coverage Died

This bill prohibits individual or group accident and sickness insurers from excluding coverage for the screening and diagnosis of autism, including genetic testing. Measure failed.

Vermont Privacy Died

Prohibits the state sale of personally identifiable information, including genetic information. Died.

Wyoming Privacy Died

Creates the Student Personal Digital Information Protection Act. The Act establishes protections to safeguard the privacy of student data, including biometric information. It is unclear whether biometric information includes genetic information or a DNA sequence. The term is not defined. Failed 2/13/2017

Minnesota Privacy Died

This bill adds third generation pedigrees to health data protections that apply to the state health department. This bill also requires government entities to obtain written informed consent to collect genetic information and human biological specimens. Consent must include the purpose for collection, the length of retention, and any dissemination outside the organization that will occur. Measure failed.

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.

Montana Other Lines of Insurance Nondiscrimination Died

This bill amends the genetic nondiscrimination law pertaining to life and disability insurance to exclude high deductible plans. 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.

New Mexico Employment Nondiscrimination, Other Topics, Privacy Died

Establishes that every person, whether a minor or an adult, has the right of bodily integrity and the freedom to assert that right. A person may not be discriminated agains or denied public accommodation, housing accommodation, employment, government services or any other services offered to the general public or otherwise penalized for the assertion of the right of bodily integrity, including the right not to provide samples of bodily fluids, bodily tissue or genetic material. 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.

New York Health Insurance Nondiscrimination Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. 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.

Tennessee Privacy Died

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. 4/18/2018 Companion House bill substituted.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Minnesota Health Insurance Nondiscrimination Died

A managed care organization that contracts with the health commissioner cannot discriminate or use any policy that has the effect of discriminating against people on the basis of genetic information. Died.

California Employment Nondiscrimination Died

Prohibits licensing boards from requiring an examination or establishing any qualification for licensing that has an adverse impact on any class because of various attributes, including genetic information. Died.

Nevada Research Died

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

Georgia Privacy, Use of Residual Newborn Screening Specimens Died

Prohibits the collection of student or family information by any state agency, local school system or educational institution, including biometric data (defined to include DNA sequence and newborn screening information), except as may be necessary to facilitate the instruction of special needs students or students participating in school physical education and athletic programs. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by employers and insurers. Measure failed.

Louisiana Other Lines of Insurance Nondiscrimination Died

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. Died.

New York Employment Nondiscrimination Died

Prohibits hiring parties from subjecting a model to harassment based on various factors, including predisposing genetic characteristics. Died.

Maryland Privacy Died

Amends the definition of biometric information under the Maryland Data privacy act. The definition of biometric information referring to a genetic print is stricken. The revised definition of biometric information includes physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

Texas Privacy Died

Creates a personal property right in a sample of genetic material and in the genetic information obtained as a result of a genetic test performed on an individual's sample. Died.

West Virginia Health Insurance Coverage Died

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

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.

Mississippi Health Insurance Coverage Died

Requires group or individual policies, contracts or certificates of health insurance issued or renewed to cover comprehensive ultrasound screening of an entire breast or breasts 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. 1/30/2018 Died in committee.

Connecticut Privacy Died

Establishes a framework for controlling and processing personal data. Establishes responsibilities and privacy protection standards for data controllers and processors. Grants consumers the right to access, correct, delete and obtain a copy of personal data and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data is defined as personal data that includes the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Died.

New Jersey Privacy Died

Makes DNA samples and genetic information resulting from DNA analysis property of the person sampled or analyzed. Died.

Illinois Privacy Died

Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died.

New York Health Insurance Coverage Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Coverage must include testing and any subsequent treatment based on the results of the test for people with a significant risk of contracting cancer. Died.

Maryland Privacy Died

This bill amends the Personal Information Protection Act, which governs the use of personal information contained in the records of certain businesses. The definition of personal information is amended to include an individual's unique biometric or genetic print. In the Senate. Died.

Oklahoma Other Topics Died

Prohibits unlawful housing discriminatory practices based on genetic information. Died.

Virginia Parentage law Died

Provides that
any person who knowingly gives any false information or makes any
false statements for the purpose of determining paternity is guilty
of a Class 6 felony. The bill further requires an a...

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. In the Senate - Hearing 3/02 at 1:00 p.m. Died.

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.

Minnesota Privacy Died

Establishes the Minnesota Consumer Data privacy Act. Gives various rights to consumers regarding personal data. Personal data includes the processing of genetic or biometric data for the purpose of uniquely identifying a person. Places obligations on businesses regarding consumer data. Died.

California Other Topics Died

require the Metropolitan Water District of Southern California to adopt rules relating to inappropriate conduct, as defined, by board members, officers, and employees. Inappropriate conduct is defined as any conduct toward others that is physical, verbal, or visual based on or because of various characteristics, including genetic information. Carries over to 2022.

New Hampshire Privacy Died

Adds biometric information to the Consumer Protection Act. Died.

Hawaii Health Insurance Coverage Died

Requires health insurers, mutual benefit societies and health maintenance organizations to provide coverage for: (1) screening to determine whether counseling and testing related to the BRCA1 or BRCA2 genetic mutation is indicated; and (2) genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill establishes a genetics advisory council to study various topics, including the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

Maryland Health Insurance Nondiscrimination Died

This bill provides an individual with a right to civil if the state genetic nondiscrimination insurance statutes are violated. Measure failed.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discriminatory housing practices based on protected status, which includes genetic information. Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to seek, obtain and hold employment without discrimination or abridgement on account of certain characteristics, including genetic information. Also prohibits insurers from refusing to insure or refusing to continue to insure an individual, limit the amount, extent, or kind of coverage available to an individual, or charge an individual a different rate for the same coverage, based on genetic information. School boards also must adopt a policy to establish that the local board of education and school personnel employed by the local board may not discriminate based on genetic information. Charter and nonpublic schools may not discriminate based on genetic information. Died.

Texas Privacy Died

Prohibits a state agency from disseminating to any person any personal data of an individual without the individual �s written consent. A state agency must retain the written consent of an individual obtained per certain requirements. A state agency may not require an individual to consent to dissemination of the individual�s personal data in exchange for access to the services provided by the agency or to the agency�s Internet website. 3/3/2021 Referred to Finance. Died.

Wisconsin Health Insurance Nondiscrimination Died

Amends health insurance law pertaining to pre-existing conditions. Insurers may not treat genetic information as a pre-existing condition. Provision stating "without a diagnosis of a condition related to the information" is stricken. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

Michigan Privacy Died

This bill requires the Department of Community Health to develop a model written, informed consent form for genetic testing. Health care professionals must have test subjects complete the form prior to ordering genetic testing. Died.

Arizona Health Insurance Coverage Died

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

Missouri Privacy Died

Requires state education agencies to obtain parental consent to collect biometric records from parents, K-12 students or through data sharing agreements with any other entity. Biometric records are defined to include DNA sequences. Died.

Florida Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill amends Florida's health_insurance_nondiscrimination law. The bill removes the exemption for life, disability and long-term care insurance under existing law and states that the law applies to other lines of insurance. Died.

New Jersey Employment Nondiscrimination, Other Topics Died

Requires adoption of and training on anti-discrimination and anti-harassment policy by certain campaign committees. Protected category includes genetic information. Died.

Iowa Health Insurance Nondiscrimination Died

Establishes the Healthy Iowa program. Residents of the state are entitled to enroll. Discrimination is prohibited with respect to members and providers based on genetic information. Died.

Displaying 151 - 200 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