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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
Alabama Privacy Died

Prohibits state agencies, district boards of education, or pre K-12 educational institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits information about the student or the student's family concerning biometric records, which is defined to include DNA sequences. Died.

Massachusetts Other Topics Died

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 various factors, including genetic information. 2/27/2020 Accompanied study order. Died.

Delaware Privacy Died

Requires the Department of Education to promulgate rules and regulations relating to the privacy and protection of student data, including DNA or other genetic material. Senate Substitute Version passed in House and Senate -- DNA or other genetic information is replaced by biometric information. The term biometric information is not defined. Substituted bill was signed by the Governor.

Missouri Employment Nondiscrimination Died

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

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 Jersey Employment Nondiscrimination Died

Creates the State Anti-Harassment and Workplace Discrimination Act. Declares that it is an unlawful employment practice and unlawful discrimination, for any person, whether an employee or applicant for employment, or intern or volunteer, in any State agency or Gubernatorial Transition Office, or person doing business with the State to discriminate against or harass an employee or applicant for employment, or intern or volunteer, based upon certain protected categories, genetic information. Died.

Maryland Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing, if certain conditions are met. Died.

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.

Oregon Health Insurance Nondiscrimination Died

Creates new provisions related to statewide coverage of health care. Renumbers sections of existing that which define pre-existing conditions, which does not include genetic information in the absence of a diagnosis of a condition related to the information. Died.

Virginia Employment Nondiscrimination Died

Prohibits discrimination in apprenticeships based on various factors, including genetic information. Died.

Massachusetts Privacy Died

Specifies when authorization to disclose health care information is required. Health care is defined to include genetic information. As of June 6, 2014, accompanied by a study order (see H4147).

California Privacy Died

Amends statute pertaining to security requirements for business that own, license, or maintain personal information about a California resident. This bill would add genetic information to the definition of personal information under the law. Died.

Minnesota Privacy Died

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

Hawaii Privacy, Research Died

This bill adds a new chapter to the Hawaii statutes on the privacy of health care information. The bill provides for the protection of "protected health information," including genetic information. The bill allows a health care provider, health plan, public health authority, employer, insurer or educational institution to disclose protected health information to health researchers if certain requirements are met, including review of the research by an IRB. Measure failed.

New Hampshire Privacy Died

This bill restricts the collection, storage, and sharing of student assessment data by the United States Department of Education and the New Hampshire department of education. Student assessment data includes biometric information, which is defined to include DNA. As of October 30, 2014, Interim Study Report: Not Recommended for Legislation in 2014 (Vote 15-0).

Maine Health Insurance Nondiscrimination Died

In amended version, prohibits pre-existing condition exclusions in individual health plans but removes text referring to genetic information. Allows restricted enrollment in individual health plans during open enrollment periods and special enrollment periods in a manner consistent with federal law. Died.

Massachusetts Health Insurance Coverage, Other Topics Died

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

Colorado Privacy Died

Concerns a study of consumer protection regulation of digital communications platforms. Introduced version included a provision related to sensitive data such as genetic data. However, this provision was deleted from the engrossed version of the bill. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Hawaii Privacy Died

Modernizes "personal information" for the purposes of security breach of personal information law. Personal information is defined to include a deoxyribonucleic acid profile. Died.

New Hampshire Privacy Died

Prohibits private entities from requiring an individual to disclose or provide biometric data, including DNA, as a condition of doing business with, engaging in any business activity or relationship with, or obtaining services from that private entity, unless the good, service, or activity provided by the private entity cannot be provided without the collection of biometric information from an individual. A private entity may not collect, use, or retain the biometric information of an individual without the individual's consent and shall not condition access to its good, service, or activity on the provision of biometric data. Died.

Maryland Coverage and reimbursement, Genetic discrimination Died

Prohibiting carriers that offer life insurance, long-term care insurance, and disability insurance policies or contracts from taking certain action regarding coverage based on whether an applicant or...

New York Health Insurance Coverage Died

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. Died.

North Carolina Health Insurance Nondiscrimination Died

Prohibits an association health plan or sponsoring association from conditioning eligibility for coverage, including continuing eligibility for coverage, on health-status factors such as genetic information. Died.

Utah Privacy Died

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. 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