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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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
Delaware Privacy Pending

Seeks to provide consumers with critical information about how their personal information is being used by data brokers. Data brokers must register with the Consumer Protection Unit of the Department of Justice and answer questions regarding their use of personal information that would be published online to inform consumers. Data brokers are required annually to complete an electronic form designated by the Director of Consumer Protection. Data brokers must report on the form the types of consumer data, including genetic data, collected directly from consumers and from consumers� devices. Carries over to 2022.

District of Columbia Employment Nondiscrimination, Health Insurance Nondiscrimination Statute

Employers, employment agencies and labor organizations may not discriminate based on genetic information with some exceptions such as to investigate a workers' compensation claim. A health benefit plan or health insurer may not establish rules for the eligibility or adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or his/her family member, including information about a request for or receipt of genetic services by an individual or the individual's family member. Health insurers also may not require or request a genetic test.

Florida Health Insurance Nondiscrimination Statute

An insurer that offers a group health insurance policy may not establish rules for eligibility or continued eligibility based on certain health status-related factors, including genetic information or use genetic information in the absence of a diagnosis as the basis for a pre-existing condition exclusion.

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 Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers, long-term care insurers, and disability income insurers from certain actions relating to genetic information or genetic testing of applicants. Prohibits these insurers from taking certain actions relating to coverage or rates unless certain conditions are met. Requires entities providing direct-to-consumer genetic testing to obtain prior written authorization to disclose identifying health information to life or health insurers. Died.

Florida Health Insurance Nondiscrimination Statute

Health care service programs may not treat genetic information as a preexisting condition in the absence of a diagnosis. A health maintenance organization that offers group health_insurance_coverage may not establish rules for eligibility or continued eligibility of an individual to enroll under the terms of the contract based on certain health status-related factors, including genetic information.

Florida Other Topics Died

The bill establishes the Florida Priority Care Project. The project aims to place a higher public priority on targeting the needs of adults who have a serious mental illness and who have a history that indicates a high probability that they could pose a threat to public safety. Requirements for the project include the use of genetic testing to help establish the correct medication regimes to be used to manage and treat a client's symptoms. Died.

Florida Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. 3/14/2020 Died in Judiciary.

Florida Privacy Statute

Informed consent is required to perform DNA analysis. The results of DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without express consent. A person who performs DNA analysis or receives records, results, or findings of DNA analysis must provide the person tested with notice that the analysis was performed or that the information was received.

Florida Health Insurance Nondiscrimination Died

Creates the Healthy Florida program to be administered by the Healthy Florida Board. Every resident of Florida is eligible and entitled to enroll under the Healthy Florida program. The program may not discriminate based on genetic information. 3/10/2018 Died in Health Innovation Subcommittee.

Florida Other Lines of Insurance Nondiscrimination, Privacy Died

Specifies criteria that must be met before a life insurer, long-term care insurer, or disability income insurer may use genetic information for underwriting purposes. Prohibits a life, long-term care, or disability income insurer from canceling coverage based solely on genetic information; requiring an applicant to take a genetic test as a condition of insurability; or obtaining, requesting, or otherwise requiring the complete genome sequence of an applicant�s DNA. Requires written consent for companies providing direct-to-consumer commercial genetic testing to share information about a consumer with a life insurer or health insurer. HB 1189 Substituted. Died.

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, except under certain circumstances, from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on genetic information. 3/10/2018 Died in Banking and Insurance.

Florida Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. 3/14/20/20 Died in Rules.

Florida Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers and long-term care insurers from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on genetic information, if there is no diagnosis of a condition related to the genetic information. The bill also prohibits these insurers from requiring or soliciting genetic information, using genetic test results, or considering a person�s decisions or actions relating to genetic testing for any insurance purpose. 3/10/2018 Died in Rules.

Florida Other Topics, Privacy Died

This bill prohibits DNA analysis and disclosure of DNA analysis results without authorization; prohibits the collection or retention of a DNA sample of another person without authorization for specified purposes; prohibits specified DNA analysis and disclosure of DNA analysis results without authorization, etc.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Florida Health Insurance Nondiscrimination Died

Creates the Healthy Florida program to be administered by the Healthy Florida Board. Every resident of Florida is eligible and entitled to enroll under the Healthy Florida program. The program may not discriminate based on genetic information. 3/10/2018 Died in Banking and Insurance.

Florida Privacy Died

Creates the Florida privacy Protection Act. Requires certain businesses that collect consumer personal information to provide certain information to the consumer. Provides that consumers have the right to direct certain businesses not to sell their personal information. Prohibits businesses from selling the personal information of consumers younger than a specified age without express authorization from the consumer or the consumer�s parent or guardian under certain circumstances. Authorizes consumers to initiate civil actions for violations. Personal information is defined to include biometric information such as DNA. 4/28/21 Read 2nd time. Substituted CS/CS/CS/HB 969 (Died in returning Messages). Laid on Table - SJ 753.

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 Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. 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.

Florida Privacy Died

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. 4/21/2021 Senate Laid on Table, companion bill passed, see HB 241 (Ch. 2021-199) SJ 547.

Florida Other Lines of Insurance Nondiscrimination Statute

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.

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.

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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. 

  • 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: September 14, 2023