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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
Minnesota Health Insurance Nondiscrimination, Research Statute

An issuer of a Medicare supplement policies or certificates may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. These entities also may not discriminate with respect to pricing on the basis of genetic information; request or require an individual or family member to undergo a genetic test; or use the manifestation of disease in an individual as genetic information about another group member 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.

Rhode Island Employment Nondiscrimination Statute

An employer, employment agency, or licensing agency may not (1) request, require or administer a genetic test, (2) affect the terms, conditions, or privileges of or terminate employment or licensure of any person who obtains a genetic test, (3) take any other action affecting the terms, conditions or privileges of employment against an employee or a license holder based on the results of a genetic test or the refusal to take a genetic test, submit family history, or reveal whether the employee, applicant or holder has taken a genetic test, (4) otherwise use genetic information to adversely affect the employment, licensure, or application for employment or licensure of any individual, or (5) reveal genetic information about employees, licensees, or applicants. Penalties for violations are set forth.

Delaware Health Insurance Nondiscrimination Statute

A health status-related factor is defined to include genetic information with respect to large group health plans, individual health plans and small employer health insurance. Group health insurers may not establish rules for eligibility of an individual to enroll based on a health status related factor. Individual health insurers may not establish rules for eligibility of an individual to enroll under the terms of the coverage based on a health status-related factor.

Maine Privacy Statute

Personal information, including genetic information, pertaining to state employees is confidential and not open to public inspection. An employee may examine records containing personal information when permitted or required by law.

New Jersey Privacy, Research Statute

A person may not (1) obtain genetic information from an individual or from an individual's DNA sample or (2) retain an individuals genetic information without prior informed consent with some exceptions, including for anonymous research where the identity of the subject will not be released. A DNA sample from an individual who is the subject of a research project must be destroyed promptly upon completion of the project or withdrawal of the individual from the project unless consent to retain the sample is provided. Additional provisions address retention and disclosure. The statutes set forth civil and criminal penalties for violations.

Virginia Employment Nondiscrimination Statute

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information.

California Other Topics Statute

Prohibits any person or other entity whose business includes performing appraisals of residential real property from discriminating against any person in making available those services, or in the performance of those services, because of various characteristics, including genetic information. Requires every contract for the sale of real property to contain a notice regarding improper or illegal considerations such as genetic information in appraisal of property.

California Health Insurance Nondiscrimination Statute

An issuer of a Medicare supplement contract must adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008 (Public Law 110-233).

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.

Nebraska Health Insurance Nondiscrimination Statute

Any hospital, medical, or surgical expense-incurred policy or certificate and self-funded employee benefit plan to the extent not preempted by federal law may not require a covered person or his or her dependent or an asymptomatic applicant for coverage or his or her asymptomatic dependent to undergo any genetic test before issuing, renewing, or continuing the policy or certificate. This does prohibit requiring an applicant for coverage to answer questions concerning family history.

Tennessee Health Insurance Nondiscrimination Statute

An insurance provider may not deny or cancel health_insurance_coverage or vary the premiums, terms, or conditions for health_insurance_coverage for an individual or his or her family member on the basis of a request or receipt of genetic services. An insurer may not request or require an individual to whom it provides health_insurance_coverage or an applicant to disclose to the insurer genetic information about the individual or family member of the individual. Life insurance, disability income, long-term care, accident only, hospital indemnity or fixed indemnity, dental or vision policies are exempt from the law.

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.

Maryland Privacy Statute

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Not effective until 10/1/2024.

New York Privacy Statute

Directs the director of the office of information technology services to conduct a study on the use of biometric identifying technology. Prohibits the use of biometric identifying technology in schools until July 1, 2022 or until the commissioner of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence.

Wyoming Privacy Statute

The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law.

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.

Louisiana Health Insurance Nondiscrimination Statute

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

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.

Utah Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Statute

An employer may not in connection with a hiring, promotion, retention, or other related decision access or (1) take into account genetic information, (2) request or require an individual to consent to release genetic information, (3) submit to a genetic test, or (4) inquire or take into account that an individual or blood relative of that person has taken a genetic test. An employer may compel disclosure of genetic information for specified reasons. A health care insurer may not in connection with the offer or renewal of an insurance product or in the determination of any underwriting decision access or otherwise (1) take into consideration private genetic information about an asymptomatic individual, (2) request or require an asymptomatic individual to consent to a release for the purpose of accessing private genetic information, (3) request or require an asymptomatic individual or his blood relative to submit to a genetic test, or (4) inquire into or otherwise take into consideration the fact that an asymptomatic individual or his blood relative has taken or refused to take a genetic test. An individual whose rights have been violated bring civil action.

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.

Michigan Health Insurance Nondiscrimination, Privacy Statute

The law requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests.

Ohio Health Insurance Nondiscrimination Statute

A health insuring corporation may not (1) cancel or fail to renew the coverage because of any health status-related factor, including genetic information, (2) require an individual seeking coverage to submit to genetic screening or testing or taken into account or inquire about such testing, (3) make a decision adverse to the applicant based on entries in medical records or other reports of genetic screening or testing, or (4) cancel or refuse to issue or renew coverage for health care services based on the results of genetic screening or testing, or (6) limit benefits of an individual or group policy, contract, or agreement based on the results of genetic screening or testing. A violation of these provisions is an unfair and deceptive act or practice in the business of insurance. Further provisions apply upon the repeal of the current protections, which are in effect until February 9, 2014.

Minnesota Health Insurance Nondiscrimination, Privacy Statute

The law requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act.

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.

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.

Maryland Privacy Statute

The law requires businesses to establish certain protections when using personal information. Personal information is defined to include an individual's genetic print.

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.

Virginia Employment Nondiscrimination Statute

An employer may not request, require, solicit or administer a genetic test as a condition of employment or refuse to hire, fail to promote, discharge or otherwise adversely affect any terms or conditions of employment of any employee or prospective employee solely on the basis of a genetic characteristic or the results of a genetic test, regardless of how the employer obtained such information or results. An employee may bring an action in a court of competent jurisdiction over an employer who took adverse action against the employee.

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.

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.

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.

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.

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.

Connecticut Use of Residual Newborn Screening Specimens Statute

The Health Commissioner must review and approve research proposals to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals.

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.

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.

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.

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.

Delaware Use of Residual Newborn Screening Specimens Statute

Prohibits research utilizing stored blood specimens or the stored data without parental consent, except for population-based studies in which all identifying information is removed. Parents may elect not to participate in blood spot storage.

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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