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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2007-2020 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.

  • 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 Citation/Title Sort descending Topic(s) Bill Status Summary
North Carolina 2020 State Bills
North Carolina 2020 S786
Employment Nondiscrimination Pending

Amends genetic nondiscrimination in employment statute.  Deletes existing provision related to genetic information and adds protected classes or protected categories, which is defined to include predisposing genetic characteristics.  5/18/2020 Referred to Committee On Rules and Operations of the Senate.

Maryland 2020 State Bills
Maryland 2020 HB 340
Privacy Died

Amends the definition of biometric information under the Maryland Data Privacy act. The definition of biometric information referring to a genetic print is stricken. The revised definition of biometric information includes 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.

Wisconsin 2020 State Bills
Wisconsin 2020 AB 871
Privacy Died

Sets forth requirements regarding the deletion of consumer personal data, including genetic data, by controllers.  4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Illinois 2020 State Bills
Illinois 2020 HB 5603
Privacy Pending

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.  5/21/20 Added Co-Sponsor Rep. Martin J. Moylan.

Arkansas State Statute
Arkansas: Ark. Code §11-5-401 et seq.
Employment Nondiscrimination

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

Louisiana State Statute
Louisiana: LRS 23:302, 23:352 and 23:368; LRS 51:2231 et seq.
Employment Nondiscrimination, Research

An employer, labor organization, or employment agency may not (1) discriminate against any employee based on genetic information, (2) require, collect, purchase, or disclose genetic information or information about a request or receipt of genetic services with respect to an employee, or (3) maintain genetic information or information about a request for or the receipt of genetic services in general personnel files. Exceptions regarding disclosure include disclosure to an occupational or other health researcher if the research complies with Part 46 of Title 45 of the Code of Federal Regulations. Additional prohibitions apply to labor organizations with respect to membership and to employers, labor organizations and employment agencies with respect to training. Employers, employment agencies and labor organizations also may not discriminate because an individual has sickle cell trait.

Minnesota State Statute
Minnesota: MS §13.386
Privacy, Use of Residual Newborn Screening Specimens

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

Nebraska State Statute
Nebraska: NRS §§44-5242.02 and 5246.02
Health Insurance Nondiscrimination

Under the Small Employer Health Insurance Availability Act, health status-related factor is defined to include genetic information and pre-existing condition is defined to exclude genetic information in the absence of a diagnosis.

North Carolina State Statute
North Carolina: NCGA §§58-3-215, 58-51-45, 58-51-95, 58-65-70, 58-68-30 and 58-…
Health Insurance Nondiscrimination

A health benefit plan, health maintenance organization or multiple employer welfare arrangement may not raise the premium or contribution rates paid for a group health benefit plan, refuse to issue or deliver a health benefit plan, or charge a higher premium rate or charge because of genetic information. Health benefit plans must comply with all applicable standards of the federal Genetic Information Nondiscrimination Act. Insurers providing accident and sickness policies or hospital, medical, or dental health service may not refuse to issue or deliver any policy that affords benefits or coverage for any medical treatment or service authorized or permitted by specified entities or carry a higher premium rate or charge by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A group health insurer may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, or treat genetic information as a pre-existing condition in the absence of a diagnosis. An individual health insurer may not increase an individual's renewal premium for continued health insurance coverage based on a health statusrelated factors, including genetic information. A sponsoring association of an employee welfare benefit program may not condition eligibility for coverage, including continuing eligibility for coverage, on health status related factors such as genetic information.

Missouri State Statute
Missouri: MRS §§375.1300 and 375.1303
Health Insurance Nondiscrimination

An insurer in making any underwriting decision may not (1) require or request a person or his/her blood relative to provide genetic information or take a genetic test, (2) inquire about a genetic test or what the results of any such test were unless given approval by that person, or (3) consider without the approval of such person the fact that genetic information or a genetic test was taken or refused by a person or blood relative of the person or the results of a test. A violation is an unfair trade practice. The law does not apply to any policy, contract or certificate of life insurance, reinsurance, disability income or long-term care coverage.

Oregon State Statute
Oregon: ORS §746.135
Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination

If a person asks an applicant for insurance to take a genetic test in connection with an application for insurance, the use of the test must be revealed to the person tested and informed consent to conduct testing is required. Favorable genetic information may not be used to induce the purchase of insurance. Genetic information may not be used to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of or otherwise affect any policy for hospital or medical expenses, and the genetic information of a persons blood relative may not be used to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of or otherwise affect any policy of insurance.

Texas State Statute
Texas: TS (Insurance) Code §546.001 et seq.
Health Insurance Nondiscrimination, Privacy, Research

Individual and group health benefit plans that request an applicant for coverage to submit to a genetic test for a permissible purpose must notify the applicant that the test is required, disclose to the applicant the proposed use of the results, and obtain prior written informed consent. A health benefit plan issuer may not use genetic information or the refusal of an applicant to submit to a genetic test to reject, deny, limit, cancel, refuse to renew, increase the premiums for, or otherwise adversely affect eligibility for or coverage under the plan. Genetic material obtained from an individual for a genetic test must be destroyed promptly after the purpose for which it was obtained with some exceptions, including (1) authorized retention of the sample for medical treatment or scientific research or (2) if the sample was obtained for research that is cleared by an institutional review board, and retention of the sample is under a requirement the institutional review board imposes on a specific research project or authorized by the research participant with institutional review board approval under federal law. A health benefit plan issuer may redisclose genetic information without authorization for actuarial or research studies if the tested individual could not be identified in any actuarial or research report and any materials that identify a tested individual are returned or destroyed as soon as reasonably practicable.

Connecticut State Statute
Connecticut: CGA 38a §816
Health Insurance Nondiscrimination

An insurance company, hospital service corporation, health care center or fraternal benefit society providing individual or group health insurance coverage may not refuse to insure, continue to insure, limit coverage, or charge an individual a different rate because of genetic information. In this type of coverage and all health insurance plans pre-existing condition exclusions may not be based on genetic information in the absence of a diagnosis.

Maine State Statute
Maine: MRS 24A §2204
Privacy

The Insurance Information and Privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

Ohio State Statute
Ohio: ORC §§3901.21, 3901.41 and 3901.501
Health Insurance Nondiscrimination

It is an unfair and deceptive act or practice in the business of insurance to engage in any underwriting standard or other practice that due solely to any health status-related factor, including genetic information, terminates or fails to renew an existing individual policy, contract, plan of health benefits, or a health benefit plan issued to an employer, for which an individual would otherwise be eligible, or, with respect to a health benefit plan issued to an employer, excludes or causes the exclusion of an individual from coverage under an existing employer-provided policy, contract, or plan of health benefits. Insurers issuing accident and sickness insurance, self-insurers or public employee health benefit plans may not consider information obtained from genetic screening or testing in processing an application or in determining insurability or inquire into the results of genetic screening or testing or use such information to cancel, refuse to issue or renew, or limit benefits. The superintendent of insurance has the authority to investigate violations of this provision.

South Carolina State Statute
South Carolina: SCCL §§38-93-10 et seq.
Health Insurance Nondiscrimination, Privacy

An accident and health insurer providing hospital, medical and surgical, or major medical coverage on an expense incurred basis, providing a corporate health services plan, or providing a health care plan for health care services by a health maintenance organization may not (1) terminate, restrict, limit, or otherwise apply conditions to coverage or restrict the sale to an individual, (2) cancel or refuse to renew the coverage of an individual, (3) exclude an individual from coverage, (4) impose a waiting period, (5) impose a pre-existing condition exclusion; (6) require inclusion of a rider that excludes coverage for certain benefits and services, or (7) adjust premium contribution amounts or establish differential in premium rates for coverage based on genetic information or a request for genetic services. Additional provisions address consent to disclose genetic information and consent to perform genetic testing. An aggrieved individual may bring civil action. he penalties and enforcement provisions of subsections (A) and (B) are in addition to penalties and enforcement provisions of federal law, including those set forth in the Genetic Information Nondiscrimination Act of 2008.

Alaska State Statute
Alaska: AS §18.13.010 et seq.
Privacy

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

Washington State Statute
Washington: RCW §49.44.180
Employment Nondiscrimination

A person, firm, corporation, or the state of Washington, its political subdivisions, or municipal corporations may not require any employee or prospective employee to submit genetic information or submit to screening for genetic information as a condition of employment or continued employment.

California State Statute
California: Cal. Health and Safety Code §1399.804, and Insurance Code §10902.1
Health Insurance Nondiscrimination

Health care service plans and carriers, agents or brokers offering health benefit plans to individuals or solicitors may not encourage or direct federally eligible defined individuals to refrain from an application for coverage because of genetic information. Plans, agents or brokers may not enter into any contract, agreement or arrangement with a solicitor that provides for or results in the compensation paid to a solicitor for the sale of a health care service plan contract or health benefit plan design to be varied because of genetic information.

Kansas State Statute
Kansas: KSA §§40-2209, 40-2209p, 40-2257, and 40-2259
Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination

The statutes restrict the use of genetic tests, information about whether an individual or family member has obtained a genetic test, and test results by a health insurance company, health maintenance organization, nonprofit medical and hospital, dental, optometric or pharmacy corporation, or a group subject to K.S.A. 12-2616 et seq. offering group policies and certificates of coverage or individual policies providing hospital, medical or surgical expense benefits. These entities may not require any individual, as a condition of enrollment or continued enrollment, higher premiums or contributions or than a similarly situated individual based on a genetic test or adjust premium or contribution amounts based on a genetic test. An accident or sickness insurer may not deny coverage based on a health status-related factors, including genetic information, and group policies providing hospital, medical or surgical expense benefits may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. The use of such information by an insurer writing life insurance, disability income insurance or long-term care insurance coverage also is restricted unless it is for the purpose of writing life insurance coverage. Life, disability income or long-term care insurers also may not provide for rates or any other aspect of coverage that is not reasonably related to the risk involved.

Arizona State Statute
Arizona: ARS §1-602
Privacy

Parents must consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as newborn screening.

West Virginia State Statute
West Virginia: WVC §18-2-5h
Privacy

The Department of Education must prohibit the collection of confidential student information, including genetic information. The Department may not transfer student or redacted data that is confidential except under specified circumstances.

Kentucky State Statute
Kentucky: KRS §61.931 et seq.
Privacy

Public agencies and nonaffiliated third parties must implement, maintain, and update security procedures and practices to safeguard personal information, including a biometric or genetic print.

Maryland State Statute
Maryland: Md. Insurance Code §27-208
Other Lines of Insurance Nondiscrimination

Unless there is actuarial justification, an insurer may not refuse to insure or make or allow a differential in ratings, premium payments, or dividends in connection with life insurance and annuity contracts because the applicant or policyholder has the sickle-cell trait, thalassemia-minor trait, hemoglobin C trait, Tay-Sachs trait, or a genetic trait that is harmless in itself.

Vermont State Statute
Vermont: VSA 18 §9331 et seq.
Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination

A policy of insurance may not be underwritten or conditioned on a requirement to undergo genetic testing or the results of genetic testing. Civil and criminal penalties are set forth for violations.

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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: August 3, 2020