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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 Sort ascending Summary
Arizona Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Life and disability insurers (disability insurance is defined in the statutes to include health insurers) may not refuse to consider an application on the basis of a genetic condition. Information about a genetic condition may not be used for underwriting or ratemaking of life and disability insurance policies unless supported by the applicants medical condition, medical history and either claims experience or actuarial projections. In the case of disability insurance the use of information about a genetic condition for underwriting or ratemaking purposes constitutes unfair discrimination in the absence of a diagnosis.

Illinois Health Insurance Coverage Statute

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden.

Montana Other Lines of Insurance Nondiscrimination Statute

Unfair discrimination between individuals of the same class and equal expectation of life in any contract of life insurance or of life annuity is prohibited. Unfair discrimination between individuals of the same class and of essentially the same hazard for disability insurance is prohibited. An insurer may not refuse to consider an application for life or disability insurance on the basis of a genetic condition. The rejection of an application or the determining of rates, terms, or conditions of a life or disability insurance contract is permissible if the applicant's medical condition and history as well as either claims experience or actuarial projections establish that substantial differences in claims are likely to result from the genetic condition.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Statute

A health carrier, long-term care insurer or life insurer from requiring or requesting an individual or his/her blood relative to take a genetic test or consider the fact that a genetic test was refused in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision in connection with the offer, sale, or renewal of health insurance. The insurance director may promulgate rules concerning genetic information and group health benefit plans. In individual, group and blanket health insurance plans, genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. Small employer carriers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted.

Colorado Other Topics Statute

Prohibits direct primary health care providers from discriminating in the selection of patients on the basis of genetic information and other protected classes.

Maryland Other Lines of Insurance Nondiscrimination Statute

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.

New York Privacy, Research Statute

Prior informed consent is required to perform a genetic test. Further disclosures require additional consent. For medical research purposes and with approval from an institutional review board and consent, a biological sample may be retained for longer than 60 days and be used for scientific research. Samples may be used for research conducted in accordance with applicable law and regulation and pursuant to a research protocol approved by an institutional review board, if individuals who provided the samples have given prior informed consent for the use of the sample for general research purposes without restrictions, and the samples have been permanently stripped of identifying information or coded to protect the individuals identity. Upon request samples that have not already been used for research must be destroyed. Family members of a research participant may not be contacted without the consent of the individual. Additional provisions address confidentiality, the incorporation of information into medical records, disclosure and penalties for violations.

West Virginia Health Insurance Nondiscrimination Statute

A health benefit plan issued in connection with a group health plan may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A health status-related factor is defined to include genetic information as defined in section of the statutes pertaining to individual group accident and sickness insurance.

Delaware Employment Nondiscrimination Statute

Employers, employment agencies, labor organization or joint labor-management committee controlling apprenticeships or other training may not discriminate based on genetic information. These entities may admit or employ any individual on the basis of genetic information in those certain instances where genetic information is a bona fide occupational qualification reasonably necessary to the normal operation of that particular business or enterprise. Enforcement provisions, processes for civil action by the Attorney General or charging party, judicial remedies and civil penalties are established.

Massachusetts Health Insurance Coverage Statute

Individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract must provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing.

North Carolina Employment Nondiscrimination Statute

A person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity may not deny or refuse employment to or discharge any person or because of the person's having requested genetic testing or counseling services, on the basis of genetic information obtained concerning the person or a member of the person's family, or because the person possesses sickle cell trait or hemoglobin C trait.

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.

Louisiana Health Insurance Nondiscrimination, Privacy, Research Statute

The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth.

Nevada Health Insurance Coverage Statute

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required.

Texas Employment Nondiscrimination, Privacy, Research Statute

The statutes restrict the use and disclosure of genetic tests and the use of family history by a licensing authority. A sample obtained from an individual for a genetic test must be destroyed promptly after the purpose for which the sample 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. Genetic information may not be disclosed without written authorization with some exceptions, including (1) if the disclosure is for information from a research study in which the procedure for obtaining informed written consent and the use of the information is governed by national standards for protecting participants involved in research projects, including guidelines issued under 21 C.F.R. Part 50 and 45 C.F.R. Part 46 and (2) the information does not identify a specific individual.

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.

Georgia Health Insurance Coverage Statute

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation.

Minnesota Other Topics, Privacy Statute

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of �13.386 of the statutes pertaining to genetic privacy.

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.

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.

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.

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.

Virginia Research Statute

Requires informed consent to conduct human research. Requires institutions or agencies conducting or proposing to conduct or authorize human research to establish a human research review committee.

Arizona Privacy Statute

A person may not order or require the performance of a genetic test without written informed consent. Genetic test results may not be disclosed without the express consent of the subject of the test or the person authorized to consent for that person.

Illinois Health Insurance Nondiscrimination Statute

A group health plan and a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

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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