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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 Primary Link Topic(s) Bill Status Sort ascending Summary
North Carolina Other Lines of Insurance Nondiscrimination Statute

No insurance company may refuse to issue or deliver any policy of life insurance solely by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A policy also may not carry a higher premium rate or charge by reason of the fact that the person to be insured possesses these traits.

Arkansas Privacy, Research Statute

No individual records of subjects in genetic research studies approved by an institutional review board or conducted subject to the requirements of the federal common rule may be subpoenaed or subject to discovery in civil suits except in cases where the information in the records is the basis of the suit. These records may not be disclosed to an insurer or employer without the informed written consent of the subject. Stored tissues, including blood, that arise from surgery or other diagnostic and therapeutic steps may be disclosed for genetic or other research studies if the patients name or social security number is not attached to or included with the specimen. Identifying information may be disclosed with the informed written consent of the individual. Published results may not identify a subject unless the individual has provided specific informed consent.

Indiana Health Insurance Nondiscrimination Statute

Every accident and sickness policy, contract through which an HMO furnishes health care, government self-insured health care plan, and employee welfare benefit plan may not (1) require a genetic screening or testing; (2) consider screening or testing information in a manner adverse to member, applicant or their family members; (3) inquire about genetic screening or test results, use or base a decision on such information to cancel, refuse to issue, renew or enter into a contract, limit benefits, or charge higher premiums under health care services coverage; or (4) make an adverse decision about applicants or their family based genetic testing or screening results in medical records or other reports. An insurer may consider voluntarily submitted genetic test results if they are favorable. A violation of the law is an unfair method of competition deceptive act and practice in the business of insurance.

Kentucky Health Insurance Coverage Statute

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network.

Nebraska Health Insurance Nondiscrimination Statute

A health benefit plan may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health carrier may not establish rules for eligibility and continued eligibility of any individual to enroll under the terms of the health benefit plan based on a health status-related factor, including genetic information.

Texas Employment Nondiscrimination Statute

It is an unlawful employment practice if an employer, labor organization, or employment agency discriminates against an individual on the basis of genetic information or refusal to submit to a genetic test. An employer, labor organization, or employment agency commits an unlawful employment practice if these entities limit, segregate, or classify an employee, member, or applicant in a way that would deprive or tend to deprive the employee, member, or applicant of employment opportunities or otherwise adversely affect the status of his or her status on the basis of genetic information or the refusal to submit to a genetic test.

New Hampshire Health Insurance Nondiscrimination Statute

A health insurer in connection with providing health insurance may not (1) require or request an individual or family member to undergo genetic testing, whether a test was taken or the results of the testing, (2) condition the provision of health_insurance_coverage or health care benefits on whether an individual or family member has undergone genetic testing or the results of the testing, or (3) consider in the determination of rates or any other aspect of health_insurance_coverage or benefits whether an individual or family member has undergone genetic testing or the results of the testing. The statutes establish a right to civil action by aggrieved individuals.

Vermont Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

It is an unfair method of competition or unfair and deceptive act or practice to (1) make or permit any unfair discrimination against any individual by conditioning insurance rates, the provision or renewal of insurance coverage, or other conditions of insurance based on the results of genetic testing where there is not a relationship between the information and the cost of the insurance risk that the insurer would assume by insuring the proposed insured or (2) to violate the Title 18 � 9334.

Florida Employment Nondiscrimination Statute

No person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity shall deny or refuse employment to any person or discharge any person from employment solely because such person has the sickle-cell trait. These entities also may not require screening or testing for the sickle-cell trait as a condition for employment.

Minnesota Use of Residual Newborn Screening Specimens Statute

During the period in which residual newborn screening specimens is retained, the health department may use blood samples and test results for newborn screening program operations. Newborn screening operations are defined to specifically exclude research, public health studies, or the development of new newborn screening tests.

Oklahoma Privacy Statute

A person who maintains genetic information may not be compelled to disclose the information except under specified circumstances.

California Other Lines of Insurance Nondiscrimination Statute

A person who underwrites or sells an annuity contract or contracts insuring, guaranteeing, or indemnifying against loss, harm, damage, illness, disability, or death, and any affiliate of that person or entity, shall not disclose individually identifiable information concerning the medical or genetic history of a customer for use with regard to granting credit.

Maine Privacy Statute

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

Maryland Other Lines of Insurance Nondiscrimination Statute

Long-term care insurers may not request or require a genetic test to deny or limit the amount, extent, or kind of coverage available; charge a different rate for the same coverage; or use a genetic test, the results of a genetic test, genetic information or a request for genetic services to deny or limit the amount, extent, or kind of coverage available or charge a different rate for the same insurance except that the results of a genetic test may be used for these purposes based on sound actuarial principles.

New York Research Statute

The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

West Virginia Privacy Statute

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.

Arizona Privacy Statute

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.

Idaho Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

With respect to disability insurance or any health benefit plan, no person may discriminate on the basis of a genetic test or private genetic information in the issuance of coverage or the fixing of rates, terms or conditions.

Missouri Health Insurance Nondiscrimination Statute

A health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility of any individual to enroll under the terms of the group health plan based on health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A small employer carrier may apply reasonable criteria in determining whether to accept a small employer into a class of business, provided that the criteria are not based on a health status-related factor, including genetic information.

South Dakota Privacy Statute

Informed written consent consisting of the information specified in the statute is required prior to ordering a predictive genetic test. The person to be tested must receive a signed copy of the form, which also must be placed in the medical record. Tests performed per a court order or for a criminal investigation are exempt.

California Other Lines of Insurance Nondiscrimination Statute

Tests for genetic characteristics may not be required to determine insurability for life and disability income insurance except for policies contingent on review or testing for other diseases and conditions and only with informed consent. Policies may only limit benefits otherwise payable if loss is caused or contributed to by the presence or absence of genetic characteristics if the insurer imposes limitations for other medical conditions that present an increased risk. A life or disability income insurer may not request a genetic test to determine eligibility for hospital, medical or surgical insurance coverage or coverage under a nonprofit hospital service or health care service plan. The statutes set forth civil and criminal penalties for violations.

Connecticut Employment Nondiscrimination Statute

It is a discriminatory practice for an employer, an employment agency, or for any labor organization to request or require genetic information from an employee, a person seeking employment or a member. These entities may not discharge, expel or otherwise discriminate against any person on the basis of genetic information.

Massachusetts Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis under the definitions for chapter 176M on nongroup health plans and 176J on small group health insurance.

North Carolina Health Insurance Nondiscrimination Statute

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.

Arkansas Health Insurance Nondiscrimination Statute

Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test.

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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