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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.

State Primary Link Topic(s) Bill Status Summary
New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New Jersey Employment Nondiscrimination Enacted

Amends employment discrimination law. Prohibits employers from paying any of its employees who are a members of a protected class at a rate of compensation, including benefits, which is less than the rate paid by the employer to employees who are not members of the protected class for substantially similar work, when viewed as a composite of skill, effort and responsibility. Member of a protected class is defined an employee who has one or more characteristics, including genetic information, for which the law prohibits discrimination in employment. 4/24/2018 Approved P.L.2018, c.9.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New Jersey Other Topics Died

Establishes the New Jersey Pharmacogenomics Commission. Died.

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.

New York Employment Nondiscrimination, Other Topics, Privacy Died

Prohibits discrimination based on genetic information in multiple sections of the statutes, including those pertaining to employment, housing, credit, education and other areas. Died.

New York Other Topics Died

Prohibits the distribution of consumers' DNA profiles submitted to direct-to-consumer genetic testing companies. Requires companies to provide a copy of their privacy policy to any consumer that submits a DNA sample and provides for civil penalties for violations of these provisions. Died.

New York Privacy Died

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

New York Privacy Died

Establishes a personal information bill of rights. Declares the right of all New Yorkers to have their personal information, including DNA, protected. Died.

New York Privacy Died

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

Oklahoma Health Insurance Coverage Died

Requires certain residents of long-term care facilities to have a pharmacogenomics profile conducted. The profile must include the results of at least eighteen genes tested and be accompanied by treatment guidance for each disease state-tested. Died.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Tennessee Privacy Enacted

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. Effective 7/1/2018.

Tennessee Privacy Died

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. 4/18/2018 Companion House bill substituted.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Virginia Employment Nondiscrimination Died

Establishes policies to prevent workplace harassment in the legislative branch. Workplace harassment is defined as unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of certain characteristics, including genetics, that (i) has the purpose or effect of creating an environment that a reasonable person would consider intimidating, hostile, or abusive; (ii) has the purpose or effect of unreasonably interfering with an employee's work performance; or (iii) affects an employee's employment opportunities or compensation. 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.

Washington Health Insurance Coverage Died

Establishes the Healthy Washington program to provide comprehensive universal single-payer health care coverage for all residents of the state. The board of Healthy Washington must create requirements and standards for the program and for health care organizations, care coordinators, and health care providers pertaining to nondiscrimination with respect to members and health care providers on the basis of genetic information. Died.

Wyoming Privacy Enacted

Prohibits the collection, retention and disclosure of genetic information without informed consent. Establishes requirements for the retention and destruction of genetic information. 3/16/2018 Governor Signed HEA No. 0060.

Arizona Privacy Enacted

Requires that genetic testing information be released only as authorized by state or federal law, including the Health Insurance Portability and Accountability Act privacy standards. Permits the release of genetic testing information to a health care provider who is providing care to the person tested and the health care provider's agent or employee. Allows a legal representative of a clinical laboratory that is in possession of the medical record to receive the genetic test and information derived from the genetic test when the laboratory is obtaining legal advice. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results. Signed by the Governor on May 22, 2019.

Arkansas Privacy Enacted

Amends the definition of personal information under Personal Information privacy Act. Protected personal information is defined to include biometric information such as DNA. 4/15/2019 HB 1943 is now Act 1030.

California Employment Nondiscrimination Died

Prohibits licensing boards from requiring an examination or establishing any qualification for licensing that has an adverse impact on any class because of various attributes, including genetic information. Died.

California Other Topics Enacted

Prohibits a person from selling a gene therapy kit unless the seller includes a notice on the seller�s internet website that is displayed to the consumer prior to the point of sale, and on a label on the package, stating that the kit is not for self-administration. Chaptered by Secretary of State. Chapter 140, Statutes of 2019. Effective January 1, 2020.

California Privacy Died

Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died.

Colorado Health Insurance Coverage Enacted

Amends the provision requiring health_insurance_coverage for mammography for an individual with a genetic predisposition. The amended version of the statute refers to guidelines of professional associations to determine coverage requirements. May 16, 2019 Signed by the Governor.

Connecticut Privacy Died

Prohibits a consumer genetic-testing company from sharing any genetic data or other personally identifiable information about a consumer with any health or life insurance company. Died.

Connecticut Other Lines of Insurance Nondiscrimination Died

Prohibits life insurance companies from requiring genetic testing or using genetic information in connection with life insurance policies and annuity contracts. 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.

Connecticut Other Topics Died

Establishes a task force to require a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of such disease. Died.

Delaware Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based upon genetic information in the issuance or renewal of disability, long-term care, and life insurance. Died.

Delaware Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based upon genetic characteristics and information in the issuance or renewal of disability and long term care insurance. Insurers also must provide notice if a genetic test is required. Died.

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 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 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 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 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 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.

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.

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.

Illinois Other Lines of Insurance Nondiscrimination Enacted

A company providing direct-to-consumer commercial genetic testing is prohibited from sharing genetic test information or other personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer. Direct-to-consumer genetic tests are added to the definition of genetic test under the Genetic Information privacy Act. 7/26/2019 Public Act. Effective January 1, 2020.

Illinois Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures for treatment, payment, health care operations, health oversight activities, and public health activities; uses and disclosures of information to a health information exchange; business associates; and establishment and disclosure of limited data sets and de-identified information. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died.

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.

Indiana Health Insurance Nondiscrimination Died

An insurer that issues an individual or group policy of accident and sickness insurance, small employer group health insurance plans, and health maintenance organization contracts may not establish rules for eligibility of an individual to enroll or continued enrollment based on any of the following health status related factors, including genetic information. Died.

Indiana Health Insurance Nondiscrimination Enacted

The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor.

Indiana Health Insurance Nondiscrimination Died

Specifies that a state employee health plan, a policy of accident and sickness insurance, and a health maintenance organization contract must provide for availability, renewability, premium rating, and coverage without regard to health status, including genetic information. Died.

Iowa Health Insurance Nondiscrimination Died

Iowa residents are eligible and entitled to enroll as a member in and receive benefits for health care services covered by the healthy Iowa program. A participating health care provider or participating care coordinator may not refuse to provide health care services to a member on the basis of genetic information. Died.

Iowa Privacy Died

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

Iowa Privacy Died

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. 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.

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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