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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 Sort descending Primary Link Topic(s) Bill Status Summary
Florida Health Insurance Nondiscrimination Died

Creates Healthy Florida Program for purpose of comprehensive universal single-payer health care coverage. The Board of the program must establish requirements and standards to promote nondiscrimination, including based on genetic information. Died.

Florida Other Lines of Insurance Nondiscrimination, Privacy Enacted

Amends the state insurance law pertaining to the use of genetic information. Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose. 6/30/2020 Approved by the Governor. Effective 7/1/2020.

Florida Privacy Died

Creates the Florida privacy Protection Act. Requires collectors to provide notice to consumers about data collection and selling practices. Provides consumers right to request data be disclosed, deleted, or corrected and to opt-in or opt-out of sale or sharing of such data. Provides nondiscrimination measures, methods for requesting data and opting-in or opting-out of sale or sharing of such data, private cause of action, enforcement, and jurisdiction. Personal information is defined to include biometric information such as DNA. 4/30/21 Died in returning messages.

Florida Employment Nondiscrimination Died

This bill prohibits appointments, terminations, assignments, and maintenance of status, compensation, privileges and other terms and conditions of employment in the state personnel system based on genetic information. Measure failed.

Florida Health Insurance Nondiscrimination Statute

Insurers offering health insurance, a self-insured plan, a multiple employer welfare arrangement, a prepaid limited health service organization, a health maintenance organization, a prepaid health clinic, a fraternal benefit society or any health care arrangement where risk is assumed may not cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information in the absence of a diagnosis. Health insurers may not require or solicit genetic information, use genetic test results, or consider a person's decisions or actions relating to genetic testing for any insurance purpose.

Florida Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers and long-term care insurers from basing decisions on genetic information. Prohibits these insurers from taking certain actions related to genetic information for any insurance purpose. Died.

Florida Privacy Enacted

Creates 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. 6/29/21 Approved by the Governor. Effective 7/1/2021.

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.

Florida Health Insurance Nondiscrimination Died

Creates Healthy Florida Program for purpose of comprehensive universal single-payer health care coverage. The Board of the program must establish requirements and standards to promote nondiscrimination, including based on genetic information. Died.

Florida Privacy, Research Enacted

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021.

Florida Neonatal sequencing Died

Children?s Medical Services Program; Deleting a requirement that the Department of Health consult with the Department of Education before prescribing certain newborn testing and screening requirement...

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.

Florida Privacy Statute

Creates 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.

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.

Georgia Other Lines of Insurance Nondiscrimination Pending

Prohibits life and long-term care insurers that receive information from genetic testing from using the information for any non-therapeutic purpose, including, but not limited to, canceling, limiting, or denying coverage or establishing differentials in premium rates. These insurers also may not require or solicit genetic information, use genetic testing results, or consider a person's decisions or actions related to genetic testing in any manner for any insurance purpose. Carries over to 2022 session.

Georgia Health Insurance Coverage Enacted

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. Act 587 Effective 1/1/2021.

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.

Georgia Employment Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Died

This bill creates guidelines such as consent requirements for the creation and storage of biometric information, which is defined to include DNA samples. The bill also prohibits life insurers from requiring genetic information to determine an applicants eligibility or rates to be charged for life insurance; however, any pre-existing genetic information must be supplied to the insurance company upon application. The bill forbids employers or employment agencies from using information derived from genetic testing for identification purposes or as a condition of employment. The bill provides remedies for individuals whose genetic information is inappropriately used. Measure failed.

Georgia Health Insurance Coverage Statute

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation.

Georgia Health Insurance Nondiscrimination Died

This bill prohibits a health group cooperative from excluding a small employer based on a health status-related factor, including genetic information in relation to an employee or dependent of an employee. Measure failed.

Georgia Health Insurance Nondiscrimination, Privacy, Research Statute

Genetic information is the property of the individual tested. Prior written authorization is required for genetic testing and release of results to anyone other than the person tested. A fraternal benefit society, a nonprofit medical service corporation, a health care corporation, a health maintenance corporation, or a self-insured health plan not subject to the exclusive jurisdiction of ERISA may not seek information derived from genetic testing, and if it is received, the information may not be used for any nontherapeutic purpose or be released without explicit written consent. Exceptions include scientific research facilities, which may conduct genetic testing and use information derived from testing for scientific research if the identity of any individual tested is not disclosed to any third party, except to an individual's physician with consent.

Georgia Genetic Data & Law Enforcement Enacted

Relating to determination of paternity, so as to align evidentiary medical and genetic testing with the Uniform Parentage Act of 2017.

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.

Hawaii Employment Nondiscrimination Statute

Employers may not discriminate against any individual because of being regarded as having an impairment, which includes employer consideration of (1) an individual's genetic information, (2) genetic information of any family member of an individual, or (3) the individual's refusal to submit to a genetic test as a condition of initial or continued employment. The statutes also contain provisions pertaining to employment agencies and labor organizations.

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.

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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