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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 ascending Summary
Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not use genetic information to establish a pre-existing condition exclusion in the absence of a diagnosis of a condition related to the genetic information. 2/23/2016 (H) Died In Committee.

New Jersey Other Topics Died

Requires testing of infants for genetic mutations associated with the development of hereditary hemochromatosis. Died.

New York Health Insurance Coverage Died

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

Massachusetts Privacy Died

Prohibits a public agency or public official from: (1) acquiring, possessing, accessing, using, or assisting with the use of or provide resources for the development or use of any biometric surveillance system, or (2) entering into a contract with or making a request to any third party for the purpose of acquiring, possessing, accessing or using information derived from a biometric surveillance system, unless expressly authorized by law. Biometric data is defined to include deoxyribonucleic acid. Died.

Missouri Health Insurance Nondiscrimination Died

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

New Jersey Health Insurance Coverage Died

Requires a hospital service corporation that provides hospital or medical expense benefits to provide coverage for screening to determine whether genetic counseling related to the BRCA1 or BRCA2 genetic mutations is indicated; genetic counseling; and if indicated, BRCA testing. Died.

New York Other Topics Died

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling. Participation in the program is voluntary, and all information is confidential. Died.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Virginia Employment Nondiscrimination Died

Requires each legislative branch agency to adopt and implement the Commonwealth Workplace Harassment Policy established by the Department of Human Resource Management. Workplace harassment is defined to include harassment based on genetic information. Died.

California Privacy Died

Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died.

Georgia Privacy Died

Except as required by the federal Individuals with Disabilities Education Act, specified information, including DNA, may not be collected, entered into any student data base, or maintained as education records by a state agency, local board of education, or school. Died.

Maine Privacy Died

Prohibits the collection, entry into an education database or maintenance of DNA by as education records by the department of education or school administrative unit. Died.

Maryland Other Topics Died

Prohibits a hospital or related institution from discriminating in admitting or providing care for an individual based on various factors, including genetic information. Died.

Massachusetts Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Measure failed.

Minnesota Privacy Died

Modifies existing law pertaining to the use of genetic information by government entities and enacts a new consumer protection law regarding the use of genetic information. Died.

New Hampshire Privacy Died

This bill restricts the collection of biometric data, including DNA or RNA, by state agencies, municipalities, and political subdivisions. Died.

New York Health Insurance Nondiscrimination Died

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. 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 Privacy Died

Limits the use of biometric identifiers by governmental bodies. Biometric identifiers are defined to include a DNA sample. Died.

West Virginia Health Insurance Nondiscrimination Died

Requires health benefit plans to provide insurance to persons without regard to their health status. Prohibits insurers from using genetic information in decisions regarding premium, deductible, copay or coinsurance. 3/5/2021 To Senate Banking and Insurance Committee. 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.

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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