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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
California Privacy Died

Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died.

Nevada Privacy, Research Statute

It is unlawful to obtain any genetic information of a person without informed consent with some exceptions, including for use in a study where the identities of the persons from whom the genetic information is obtained are not disclosed to the person conducting the study. It is unlawful to retain genetic information that identifies a person without first obtaining the informed consent with some exceptions. Except as otherwise provided, a person who obtains the genetic information for use in a study must destroy that information upon completion of the study or withdrawal of the person from the study. Criminal penalties and a right to civil action are established for violations.

New Jersey Employment Nondiscrimination Statute

It is an unlawful employment practice to refuse to hire or employ or to bar or to discharge or require to retire from employment such individual or to discriminate against such individual in compensation or in terms, conditions or privileges of employment based on genetic information or because of the refusal to submit to a genetic test.

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.

Nevada Employment Nondiscrimination Statute

It is an unlawful employment practice for an employer, a labor organization or an employment agency to (1) ask or encourage a prospective or current employee or member of the labor organization to submit to a genetic test, (2) require or administer a genetic test to a person as a condition of employment or membership, or (3) deny, alter the terms, conditions or privileges of, or terminate employment or membership based on genetic information.

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.

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.

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.

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.

Iowa Health Insurance Nondiscrimination Died

Iowa residents are eligible and entitled to enroll as a member in and receive benefits for health care services covered by the healthy Iowa program. A participating health care provider or participating care coordinator may not refuse to provide health care services to a member on the basis of genetic information. Died.

Maryland Health Insurance Nondiscrimination, Other Topics Enacted

Introduced version: Declares that it is the policy of the state to provide affordable health care to all regardless of various factors, including genetic information. Prohibits discrimination based on genetic information by a hospital; a person licensed or otherwise regulated by the Maryland Department of Health; and a person, including a health maintenance organization, that provides health benefits and has a certificate of authority from issued by the Maryland Department of Insurance. Genetic information removed from protected classes of information upon amendment. Provisions related to genetic information not present in final version of bill. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

Utah Employment Nondiscrimination Enacted

Introduced version prohibited a lobbyist from engaging in unlawful harassment, including based on genetic information. The language pertaining to genetic information was not included in the final version signed by the Governor on 3/26/2019.

Maryland Health Insurance Nondiscrimination Statute

Insurers, nonprofit health service plans and health maintenance organizations, may seek verification from health care providers that offer wellness programs about health factors that make it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Health factors are defined to include genetic information.

West Virginia Health Insurance Coverage Died

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. Died.

West Virginia Health Insurance Coverage Died

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. Died.

Michigan Health Insurance Nondiscrimination, Privacy Statute

Insurers that provide Medicare supplement policies or certificates only may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. Insurers of these policies or certificates may not (1) discriminate with respect to pricing on the basis of genetic information, (2) request or require an individual or family member to undergo a genetic test (with an exception regarding requesting a test), or (3) use the manifestation of disease in an individual as genetic information about another group members and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met.

New York Health Insurance Nondiscrimination Statute

Insurers or corporations delivering group or blanket health policies that provide hospital, surgical or medical expense coverage may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Individual and group or blanket health insurance policies or contracts may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis.

Florida Health Insurance Nondiscrimination Statute

Insurers offering health insurance, a self-insured plan, a multiple employer welfare arrangement, a prepaid limited health service organization, a health maintenance organization, a prepaid health clinic, a fraternal benefit society or any health care arrangement where risk is assumed may not cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information in the absence of a diagnosis. Health insurers may not require or solicit genetic information, use genetic test results, or consider a person's decisions or actions relating to genetic testing for any insurance purpose.

Florida Other Lines of Insurance Nondiscrimination Statute

Insurers may not refuse to issue or deliver any policy of life insurance or disability insurance that affords certain services and benefits or impose a higher premium rate or charge for those policies solely because the person to be insured has the sickle-cell trait.

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.

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.

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.

Florida Privacy Statute

Informed consent is required to perform DNA analysis. The results of DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without express consent. A person who performs DNA analysis or receives records, results, or findings of DNA analysis must provide the person tested with notice that the analysis was performed or that the information was received.

Delaware Privacy, Research Statute

Informed consent is required to obtain or retain genetic information about an individual. Exemptions include anonymous research where the identity of the subject will not be released. A sample from which genetic information has been obtained must be promptly destroyed with certain exceptions, including retention for anonymous research. An individual may inspect, request correction of and obtain genetic information from the records of that individual. The law sets forth civil penalties for violations.

Arizona Privacy, Research Statute

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

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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