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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
Rhode Island Health Insurance Nondiscrimination, Privacy, Research Statute

Insurance administrators, health plans and providers of accident and sickness insurance, nonprofit hospital corporations, nonprofit medical service corporations, and HMOs are prohibited from releasing genetic information without prior written authorization. Individuals participating in research settings governed by the Federal Policy for the Protection of Human research Subjects are exempt. Tests conducted purely for research are excluded from the requirements set forth, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. An individual or group health insurance contract, plan or policy (excluding disability income, long term care and insurance supplemental policies) may not use a genetic test or genetic information or request for genetic tests or genetic information or the results of a genetic test for specified purposes, including for underwriting. Provisions pertaining to the release the results of a genetic test or genetic information do not apply to releases in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. Authorization is required for each re-disclosure except for participating in research settings governed by the Federal Policy for the Protection of Human research Subjects.

Tennessee Health Insurance Nondiscrimination Statute

Under the Health Insurance Portability, Availability and Renewal Act group health plans and other issuing group health_insurance_coverage may not base rules for eligibility or continued eligibility on a health status-related factor, including genetic information.

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 Employment Nondiscrimination, Privacy Statute

An employer may not (1) discriminate against any individual because of genetic information or because of an individuals refusal to submit to a genetic test or provide the results of a genetic test, (2) limit, segregate, or classify its employees or applicants because of genetic information or the individual's refusal to submit to a genetic test or provide the results of a genetic test, or (3) request or require a genetic test as a condition of hiring or determining benefits.

New York Other Topics Statute

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's.

Wyoming Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A policy of group or blanket disability insurance or health benefit plan covering small employers may not treat genetic information as a pre-existing condition in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. These entities also may not deny eligibility, or adjust premium or contribution rates based on genetic testing information of an individual or family member or request or require predictive genetic testing information about an individual or family member except as needed for diagnosis, treatment, or payment purposes.

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.

Kansas Privacy Statute

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing.

Nebraska Health Insurance Nondiscrimination Statute

A health carrier that decides to discontinue offering a particular type of individual policy or contract in the state and offer another option of coverage must act uniformly without regard to health status-related factors related to any covered individual, including genetic information. A health carrier offering a network health plan must terminate coverage uniformly, as permitted, without regard to health status-related factors, including genetic information.

Louisiana Health Insurance Nondiscrimination Statute

It is an unfair method of competition and deceptive act and practice in the business of insurance to discriminate against an insured, enrollee, or beneficiary in the issuance, payment of benefits, withholding of coverage, cancellation or nonrenewal of a policy, contract, plan, or program based upon the results of a genetic test or receipt of genetic information. Actions of an insurer or third parties dealing with an insurer taken in the ordinary course of business in connection with the sale, issuance or administration of a life, disability income, or long-term care insurance policy are exempt from the law.

Nevada Health Insurance Nondiscrimination Statute

A health maintenance organization, a carrier serving small employers, a corporation that provides health insurance, individual health insurers and group health insurers may not (1) require an insured person or family member to take a genetic test or disclose whether one has been taken or (2) determine the rates or any other aspect of the coverage or benefits based on genetic information or whether the insured person or member of his family has taken a genetic test. These entities may not establish rules of eligibility based on a health status-related factor, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. The provisions to not apply to any of the above entities in terms of the issuance of a policy of health insurance that provides coverage for long-term care or disability income. Insurers or organizations that provide health coverage pursuant to sections 689A, 689B, 689C, 695A, 695B, 695C, 695D, and 695F must comply with the federal law, the Genetic Information Nondiscrimination Act.

Utah Privacy Statute

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

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.

Michigan Employment Nondiscrimination Statute

An employer may discriminate against an individual because of genetic information that is unrelated to the individual's ability to perform the duties of a particular job or position. An employer also may not require an individual to submit to a genetic test or provide genetic information as a condition of employment or promotion. An employee may voluntarily submit genetic information that is relevant to health and safety in the workplace, and an employer may use genetic information submitted for that purpose.

Ohio Health Insurance Nondiscrimination Statute

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.

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.

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.

Maryland Other Topics Statute

Establishes requirements for the use of genetic genealogical DNA analysis for criminal justice purposes.

New Jersey Health Insurance Nondiscrimination Statute

Individual or group hospital service corporations and individual or group medical or health service corporations providing hospital or medical expense benefits, individual health insurance policies, group health insurance policies, and contracts for health care services may not exclude any person or eligible dependent or establish any rates or terms on the basis of any genetic characteristic.

Virginia Health Insurance Nondiscrimination, Privacy Statute

A person proposing to issue, re-issue, or renew accident and sickness insurance, excluding disability income insurance, issued by any insurer providing hospital, medical and surgical or major medical coverage on an expense incurred basis, a corporation providing a health services plan, or an HMO providing a health care plan may not on the basis of any genetic information or a request for genetic services (1) terminate, restrict, limit, or otherwise apply conditions to coverage of an individual 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) require inclusion of a rider that excludes coverage for certain benefits and services, (6) establish differentials in premium rates for coverage, or (7) disclose any genetic information about an individual or his/her family member collected or received in connection with any insurance transaction unless the disclosure is made with the written authorization of the 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 Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A health plan company in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision may not (1) require or request an individual or his or her blood relative to take a genetic test, (2) make any inquiry about a genetic test or what the results of any such test were, or (3) take into consideration the fact that a genetic test was taken or refused or the results of such a test. A life insurance company or fraternal benefit society requiring a genetic test for the purpose of determining insurability for life insurance must obtain informed written consent. A violation is subject to the investigative and enforcement authority of the insurance commissioner.

Rhode Island Health Insurance Nondiscrimination Statute

In the statute sections pertaining to large group, individual health insurance and small employer health insurance a health status-related factor is defined to include genetic information, and pre-existing condition exclusions may not be based on genetic information the absence of a diagnosis.

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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