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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
New York Use of Residual Newborn Screening Specimens Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

Utah Privacy Died

Requires a government agency to make an annual report to the state auditor regarding: the government agency's collection, use, and disclosure of personal identifying information; any misuse or improper disclosure of personal identifying information; and measures taken to notify individuals of any misuse or improper disclosure. Personal identifying information includes DNA. 3/5/2021 House filed.

Wisconsin Employment Nondiscrimination Died

Allows the Department of Workforce Development or an individual who is alleged or was found to have been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court in addition to or in lieu of filing an administrative complaint, with some exceptions. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Mississippi Privacy Died

Allows parents to opt out of certain activities conducted by the public school districts, including the collection of biometric information. Biometric information is defined to include DNA. 2/23/2016 (S) 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 accident and health insurance policies to cover the cost of genetic testing for people with a family history of cancer when the attending physician determines the person has a significant risk of cancer. Died.

Oklahoma Privacy Died

This bill prohibits collection or retention of biometric data in connection with motor vehicle registration or operation, the issuance or renewal of driver licenses or the issuance or renewal of any identification cards by any department or agency of this state charged with those activities. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the establishment of rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, in Virginia share health insurance policies. This bill also prohibits pre-existing condition exclusions in these policies based on genetic information in the absence of a diagnosis of a condition related to such information. Measure failed.

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.

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.

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.

Maryland Health Insurance Nondiscrimination 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. 3/28/2019 Unfavorable Report by Health and Government Operations. Withdrawn.

Maryland Privacy Died

Requires certain private entities in possession of biometric identifiers or biometric information to develop a written policy, made available to the public, establishing a certain retention schedule and guidelines for permanently destroying biometric identifiers and biometric information. Biometric identifier is defined to includes a genetic print. The bill defines confidential and sensitive to include a genetic marker and genetic testing information. In the House - Withdrawn by Sponsor. Died.

Minnesota Privacy Died

This bill amends the definition of genetic test in the statutes regarding government data practices. Measure failed.

Montana Other Lines of Insurance Nondiscrimination Died

Creates the Montana family and medical leave insurance fund. Applicants for coverage must provide eligibility documentation. The department may not require documentation that exceeds the right to privacy allowed under HIPAA, the ADA and GINA. Died.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Research Died

Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19.

Tennessee Privacy Died

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

West Virginia Privacy Died

Creates a Longitudinal Data System, which links child care, student and workforce unit record data, and governing board of the system. The governing board must prohibit the collection of confidential information, which includes genetic information. 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.

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.

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.

Massachusetts Other Topics Died

Pertains to municipal master plans. Master plans developed should take into account to the extent feasible ways in which future policies and programs can advance equity based on various factors such as genetic information. Died.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

New Jersey Other Topics Died

Prohibits discrimination in health programs or activities based on certain factors, including genetic information. Died.

New York Employment Nondiscrimination Died

Prohibits clients and modeling agencies from subjecting a model to harassment based on various characteristics, including predisposing genetic characteristics, where such harassment has the purpose or effect of unreasonably interfering with an individual's provision of modeling services by creating an intimidating, hostile, or offensive environment. Died.

Rhode Island Privacy Died

Enacts the Consumer Protection privacy Act. Establishes consumer protections pertaining to the collection and use of personal information, including an individual's DNA, by businesses. Died.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

California Other Topics Died

This bill prohibits the denial of a workers' compensation claim solely because the motivation behind what caused the employee's injury or injury resulting in death was related to an immutable characteristic of the employee. The bill also states that physicians assigning apportionment to the causes of permanent disability by finding what approximate percentage of the disability is a direct result of the employment-related injury versus other factors may not consider genetic predisposition a cause or other factor of disability. Measure failed.

Florida Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers, long-term care insurers, and disability income insurers from certain actions relating to genetic information or genetic testing of applicants. Prohibits these insurers from taking certain actions relating to coverage or rates unless certain conditions are met. Requires entities providing direct-to-consumer genetic testing to obtain prior written authorization to disclose identifying health information to life or health insurers. Died.

Kentucky Privacy Died

Creates a parent's right to consent in writing before any record of the minor child�s blood or deoxyribonucleic acid is created, stored, or shared, unless authorized pursuant to a court order or an ongoing criminal investigation. Died.

Maryland Other Topics Died

A hospital or related institution may not discriminate in admitting or providing personal care based on genetic information. Died.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Minnesota Privacy Died

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

New Hampshire Privacy Died

Declares that an individual's genetic information and DNA sample are the property of the individual. Committee Report: Referred to Interim Study, 05/05/2016.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Died.

Texas Other Topics Died

Proposes a Constitutional Amendment providing for the recognition of equal rights of all people. States that equality under the law may not be denied or abridged based on numerous factors, including genetic information. Died.

Wisconsin Employment Nondiscrimination Died

Permits the Department of Workforce Development (DWD) or a person who has been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court to recover compensatory and punitive damages caused by the act of discrimination or unfair honesty or genetic testing after the completion of all administrative proceedings before DWD and the Labor and Industry Review Commission concerning the violation. Failed to pass pursuant to Senate Joint Resolution 1.

Connecticut Health Insurance Coverage Died

Requires individual and group health insurers to provide coverage for breast cancer chemoprevention counseling, risk assessment, genetic testing and counseling for any woman who is at increased risk for breast cancer due to family history, prior personal history of breast cancer, positive genetic testing or other indications as determined by a health care provider. Died.

Illinois Privacy Died

This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to firearms.

Maryland Privacy Died

Sets forth requirements for governmental units, including an executive, legislative or judicial agency, a department, a board, a commission, an authority, a public institution of higher education, or a unit or instrument of the state that collects or discloses personal information. Defines personal information to include an individual's genetic print. Died.

Alabama Privacy Died

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

Delaware Privacy Died

Restricts the use of a child's personally identifiable information, including DNA and other genetic material, by the operator of an internet service. Substitute bill passed by House and Senate, but substitute bill does not include language regarding DNA and genetic information. Substituted bill was signed by the Governor.

Illinois Health Insurance Coverage Died

Amends the Medical Patient Rights Act. Provides that all persons have a right to request an annual breast cancer screening mammogram under the age of 40 if such person has a family history of breast cancer or genetic testing has confirmed likelihood that such person has otherwise tested positive for BRCA1 or BRCA2 mutations. Died.

Maryland Other Lines of Insurance Nondiscrimination Died

For a stop-loss insurance policy or contract issues to a small employer, a medical stop-loss insurer may not increase cost-sharing or decrease coverage for a specific individual within the plan or exclude any employee or dependent base on an actual or expected health-status related factor, including genetic information. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Missouri Research, Use of Residual Newborn Screening Specimens Died

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. 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