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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
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.

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.

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.

Maryland Privacy Died

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information, including biometric information. Biometric information is defined as 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.

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 Senate - Hearing 1/27 at 1:00 p.m. Died.

Minnesota Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

Nebraska Privacy Died

This bill amends section 71-551 of the statutes on genetic testing. Proposed changes address the types of genetic tests covered under law and and consent requirements. Measure failed.

New York Health Insurance Nondiscrimination Died

This 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 Health Insurance Coverage Died

Provides insurance coverage for colonoscopies for individuals 45 or older based on risk factors, including genetic history. Died.

Texas Privacy Died

This bill establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

West Virginia Health Insurance Coverage Died

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. Died.

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.

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.

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 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.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Mississippi Health Insurance Nondiscrimination Died

Prohibits health plans from denying coverage for a preexisting condition unless certain conditions are met. Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/30/2018 Died in Committee.

New Jersey Privacy Died

Establishes personal property rights to DNA samples and genetic information resulting from DNA analysis. Requires consent for use of samples and information from person sampled or analyzed. Died.

New York Privacy Died

Requires written notification to parents of infant's whose DNA or blood spots are retained. Died.

Oklahoma Other Topics Died

Prohibits discrimination based on genetic information in housing and the full and equal enjoyment of the goods, services, facilities, privileges, advantages, and accommodations of a place of public accommodation. Died.

Virginia Employment Nondiscrimination Died

This bill amends the state employment genetic nondiscrimination law by adding the Commonwealth or any of its agencies, institutions, or political subdivisions, or any public body to the list of entities covered under the law. Measure failed.

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

Prohibits discrimination based on the results of a genetic test or the provision of genetic information. Insurers may not require and applicant to undergo a genetic test or answer questions about genetic testing. Died.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 2/23/2021 Committee recommended measure be held for further study. Died.

Washington Health Insurance Coverage Died

Substitute bill version: Requires the drug utilization review board to consider the safety, efficacy, and cost-effectiveness of drugs and gene therapies in its recommendations to the director of the authority regarding coverage for medical assistance programs. 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.

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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