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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
Iowa Health Insurance Nondiscrimination, Privacy, Research Statute

Health insurers may not discriminate based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. A carrier or organized delivery system offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based on a health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Montana Health Insurance Nondiscrimination Died

Health insurance issuers offering individual health_insurance_coverage may not establish rules for eligibility, including continued eligibility, of any individual based on a health status-related factor, including genetic information, of the individual or a dependent of the individual. Died.

New Hampshire Health Insurance Nondiscrimination Statute

Health carriers may not establish rules of eligibility or continued eligibility for health coverage based on health status related factors of any employee or dependent, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

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.

California Health Insurance Nondiscrimination Statute

Health care service plans, self-insured employee welfare benefit plans, and multiple employer welfare arrangements may not refuse to enroll any person, refuse to accept or renew a subscriber, charge a higher rate, or offer different terms, conditions or benefits on the basis of genetic characteristics that may be associated with disability in that person or that persons offspring. A plan may not seek information about genetic characteristics for non-therapeutic purposes. Specific penalties are set forth for violations by self-insured employee welfare benefit plans and multiple employer welfare arrangements.

California Health Insurance Nondiscrimination Statute

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.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers in the group market may not establish rules for eligibility or continued eligibility based on genetic information or impose preexisting condition exclusions based on genetic information in the absence of a diagnosis.

Alabama Health Insurance Nondiscrimination Statute

Health benefit plans, including the Alabama Medicaid Agency, may not require a genetic test to determine if a person has a predisposition to cancer as a condition of insurability or use the results of such a test to determine insurability or discriminate with respect to rates or benefits. The statutes set forth penalties for insurance companies or health maintenance organizations that violate the law.

North Dakota Health Insurance Nondiscrimination Statute

Health benefit plans covering small employers and group policies of hospital and medical insurance may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health status-related factor is defined to include genetic information in the chapter of the law pertaining to small employer employee health insurance.

Alabama Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Health and disability insurers may not deny applicants insurance coverage because of a diagnosis of sickle cell anemia.

South Carolina Health Insurance Nondiscrimination Statute

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

Oklahoma Health Insurance Nondiscrimination Statute

Group accident and sickness policies may not treat genetic information as a pre-existing condition or base eligibility or continued eligibility of any individual on health-status-related factors, including genetic information.

New Hampshire Privacy Died

Grants consumers the right to request that a business disclose the type of personal information it collects, the purpose for which it is collected, and the categories of third parties with which it is shared. Authorizes consumers to opt out of the sale of their personal information. Personal information is defined to include biometric information such as an individual's DNA. 10/29/2020 Interim Study Report: Recommended for Future Legislation (Vote 10-5). Died.

California Privacy Enacted

Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. Note: AB 375 was amended in June of 2018. Earlier versions of the bill do not address biometric information, including DNA. June 28, 2018 Signed by the Governor.

California Privacy Statute

Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. On or before January 1, 2020, the Attorney General must solicit broad public participation to adopt regulations to further the requirements set forth in the law.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

Utah Privacy Enacted

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities. Signed by the Governor on 3/23/2016.

Utah Privacy Statute

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities.

Virginia Privacy Died

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. Died.

Nevada Employment Nondiscrimination Statute

genetic_discrimination with regard to apprenticeship agreements is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information.

Colorado Health Insurance Nondiscrimination, Privacy, Research Statute

Genetic information the property of the individual, and written consent is required for its disclosure other than for diagnosis, treatment or therapy. Health care entities may not retain or use genetic information for non-therapeutic purposes or request or require a genetic test; however, test results may be used on a limited basis to make payment decisions. Exceptions under the law include the use of genetic information for scientific research if the identity of the individual to whom the genetic information pertains is not disclosed to a third party other than the individuals physician with written consent. The law provides remedies for individuals whose rights are violated.

Illinois Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Statute

Genetic information may only be released to the individual tested and to other authorized persons with a few exceptions. An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance, and an insurer that receives this information may not use it for non-therapeutic purposes unless the favorable results of a genetic test are voluntarily submitted. An employer, employment agency, labor organization, and licensing agency must treat genetic testing and genetic information in a manner that is consistent with federal law, including but not limited to the Genetic Information Nondiscrimination Act of 2008. Prohibited actions by employers, employment agencies and labor organizations are specified. No person may disclose the identity of any person upon whom a genetic test is performed or the results of a genetic test in a manner that permits identification of the subject of the test with some exceptions. A company providing direct-to-consumer genetic testing must obtain consent from the individual tested to share genetic information with any health or life insurance company.

Utah Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. The genetic testing privacy act, which prohibits health insurance discrimination, is applicable to insurers except as permitted under the Medicare Supplement Minimum Standards Act. The insurance commissioner may adopt rules regarding nondiscrimination for genetic testing or genetic information in Medicare supplement policies and certificates.

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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