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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
Mississippi Health Insurance Nondiscrimination Died

This bill creates the genetic nondiscrimination in health insurance act. No health benefit plan may cancel, deny or refuse to renew benefits or coverage based on genetic information. This bill also places restrictions on health benefit plan's ability to request or require disclosure of genetic information. Measure failed.

New Hampshire Privacy Died

Grants consumers the right to request that a business disclose the type of personal information it collects, the purpose for which it is collected, and the categories of third parties with which it is shared. Authorizes consumers to opt out of the sale of their personal information. Personal information is defined to include biometric information such as an individual's DNA. 10/29/2020 Interim Study Report: Recommended for Future Legislation (Vote 10-5). Died.

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.

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.

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.

Connecticut Other Topics Died

Requires a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of disease. Died.

Illinois Employment Nondiscrimination, Privacy Died

This bill amends the Genetic Information privacy Act and makes technical changes to the section of the law pertaining to employers. Measure failed.

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.

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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Utah Privacy Died

Provides consumers the right to access, correct, and delete certain personal data. Gives consumers the right to opt out of the collection and use of personal data for certain purposes. Requires certain businesses that control and process personal data of consumers to: safeguard personal data; provide clear information to consumers regarding how the consumer's personal data are used; accept consumer requests to exercise the consumer's rights under this bill; comply with a consumer's request to exercise the consumer's rights under this bill; and maintain data protection assessments. Creates a process for a consumer to submit requests and appeal a business's decision regarding the business's processing of the consumer's personal data. Allows the Division of Consumer Protection to accept and investigate consumer complaints regarding the processing of personal data. Creates a right for a consumer to know what personal information a business collects, how the business uses the personal information, and whether the business sells the personal information. Allows a consumer to require a business to delete personal information, with
exceptions, and direct a business that sells personal information to stop selling the consumer's personal information. 3/5/2021 Senate Filed. Died.

Wisconsin Privacy Died

Requires controllers of consumers' personal data to provide a consumer with copies of the consumer's personal data processed by the controller. Personal data includes genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

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.

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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