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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 Summary Sort ascending
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.

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not exclude genetic information as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/31/2017 Died in Committee.

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 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 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.

Oklahoma Privacy, Use of Residual Newborn Screening Specimens Statute

Creates the Parents' Bill of Rights, including the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order.

Mississippi Privacy Died

Creates the parental authority act. Parental rights include the he right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (H) Died In Committee.

Oklahoma Privacy Pending

Creates the Oklahoma Computer Data privacy Act, which applies to certain businesses that collect consumers' personal information, including biometric information. Provides guidelines for the use of personal information in research. Provides consumers the right to request disclosure of certain information; the right to request the deletion of their information; the right to request and receive a disclosure of personal information sold or disclosed; and the right to opt in and out of the sale of their personal information. Biometric information is defined to include DNA. 3/22/2021 Second Reading in Senate Judiciary. Carries over to 2022.

Montana Other Lines of Insurance Nondiscrimination Died

Creates the Montana family and medical leave insurance fund. Applicants for coverage must provide eligibility documentation. The department may not require documentation that exceeds the right to privacy allowed under HIPAA, the ADA and GINA. Died.

Texas Health Insurance Nondiscrimination Died

Creates the Healthy Texas Program. The board for the program must create policies that promote nondiscrimination with respect to members and providers with regard to genetic information. Died.

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 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.

California Health Insurance Nondiscrimination Died

Creates the Healthy California Board, which is responsible for the establishment of the Healthy California program to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Consistent with the Unruh Civil Rights Act, the Board must promote nondiscrimination with respect to members and health care providers on the basis of genetic information and other characteristics. Died.

California Privacy, Research Enacted

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research. 10/6/2021 Approved by the Governor. Chaptered by Secretary of State. Chapter 596, Statutes of 2021. Effective January 1, 2022.

California Privacy, Research Statute

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research.

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 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.

North Carolina Employment Nondiscrimination, Other Topics Died

Creates the Equal Employment and Equal Access to Public Accommodations Act. Declares that it is the public policy of the State to protect and safeguard the right and opportunity to all individuals to seek, obtain and hold employment without discrimination or abridgment and to enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination because of race, sex, national origin, citizenship, religion, age, veteran status, genetic information, pregnancy, handicap, or disability. Declares that it is the policy of the State Board of Community Colleges, local boards of trustees of the State of North Carolina, and the Board of Governors of the University of North Carolina not to discriminate among students. Died.

Rhode Island Privacy Died

Creates the Consumer privacy Protection Act. Establishes requirements for the collection, use, sale, retention and disclosure of personal information by businesses. Personal information is defined to include biometric information such as DNA. Died.

Illinois Privacy Died

Creates the Consumer privacy Act. Personal information is defined to include biometric information such as deoxyribonucleic acid. Provides consumers rights with regard to the collection and use of personal information businesses. Died.

North Carolina Privacy Pending

Creates the Consumer Data privacy Act of North Carolina. Prohibits data controllers from processing sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of sensitive data concerning a known child, without processing such data in accordance with the federal Children's Online privacy Protection Act. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022.

Colorado Privacy Enacted

Creates the Colorado privacy Act. Prohibits the processing of a consumer's sensitive data without first obtaining the consumer's consent. Sensitive data includes genetic or biometric that may be processed for the purpose of uniquely identifying an individual. 7/7/2021 Governor signed. Effective July 1, 2024.

California Health Insurance Nondiscrimination Died

Creates the California Guaranteed Health Care for All program, or CalCare, to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Declares that all California residents regardless of various characteristics, including genetic information, are entitled to full and equal accommodations, advantages, facilities, privileges, or services in all health care providers participating in CalCare. Carries over to 2022.

Alabama Privacy Died

Creates the Alabama Consumer privacy Act. Allows a consumer to request that a business: (1) disclose personal information that it collects; (2) delete certain personal information; (3) disclose the sale of certain personal information to third parties; and (4) allow a consumer to opt out of the sale of personal information. Prohibits a business from retaliating against a consumer for making a request for disclosure or for opting out and from selling the personal information of a consumer under 18 years of age. Personal information is defined to include biometric information such as DNA. 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.

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 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.

Connecticut Privacy Enacted

Creates a task for concerning consumer privacy. The introduced version of the bill was amended to create a task force rather than set forth certain requirements pertaining to the privacy of personal information such as DNA. Signed by the Governor 7/9/2019.

Washington Other Topics Died

Creates a study committee on human genome editing. Died.

Mississippi Employment Nondiscrimination Died

Creates a small business health insurance pool. WIth regard to the pool, genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Died.

Mississippi Health Insurance Nondiscrimination Died

Creates a small business health insurance pool. Genetic information may not be excluded as a preexisting condition in the small business health insurance pool in the absence of a diagnosis of the condition related to the genetic information. Died.

Texas Privacy Died

Creates a personal property right in a sample of genetic material and in the genetic information obtained as a result of a genetic test performed on an individual's sample. Died.

Connecticut Other Topics Died

Creates a penalty for the unauthorized public photography of an individual with a genetic or medical condition. Died.

Kentucky Privacy Died

Creates a parent's right to consent in writing before any record of the minor child�s blood or deoxyribonucleic acid is created, stored, or shared, unless authorized pursuant to a court order or an ongoing criminal investigation. Died.

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

West Virginia Privacy Died

Creates a Longitudinal Data System, which links child care, student and workforce unit record data, and governing board of the system. The governing board must prohibit the collection of confidential information, which includes genetic information. Died.

Connecticut Other Topics Enacted

Creates a health data collaborative working group to examine and make recommendations regarding (1) precision medicine and personalized health; (2) economic growth initiatives for businesses working in certain scientific areas; (3) health data access, privacy and security initiatives; and (4) platforms for collecting health data in order to understand the interplay between genetic, behavioral and environmental factors in the incidence of disease or illness. 6/30/2017 Signed by the Governor. Effective immediately.

Tennessee Other Topics Died

Creates a genetic advisory committee. Substituted by 2019 SB 127, which became Pub. Ch. 43 April 3, 2019.

New York Employment Nondiscrimination Died

Creates a company climate report system to assess the workplace environment of companies doing business in New York. Requires companies to submit biennial climate reports based on an anonymous survey of employees to assess the workplace environment including, but not limited to, pay equity, sexual harassment and discrimination based on various factors, an individual's predisposing genetic characteristics. Died.

Washington Privacy Pending

Creates a charter of people's personal data rights. Establishes the rights of an individual with regard to personal information. Prohibits a person or legal entity processing captured personal information in a manner that discriminates against consumer on the basis of various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Maine Employment Nondiscrimination Enacted

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information. 6/8/21 Signed by the Governor. Effective 90 days after adjournment (March 30, 2021).

Maine Employment Nondiscrimination Statute

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information.

Washington Employment Nondiscrimination Died

Concerns harassment and discrimination by legislators and legislative branch employees, including discrimination based on genetic status. Substitute bill, which did not include genetic discirmination provision, was enacted.

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.

Maine Privacy Died

Clarifies that certain personal information of municipal employees is confidential and a record or portion of a record containing that information in the possession of a municipal government is not a public record. Personal information includes genetic information. Died.

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...

Arizona Coverage and reimbursement Introduced

Cancer screening; coverage; gene mutation.

Minnesota Privacy Died

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

Minnesota Privacy Died

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