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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.

State Primary Link Topic(s) Bill Status Summary
Michigan Health Insurance Nondiscrimination Statute

An expense-incurred hospital, medical, surgical policy or certificate or health care corporation may not require an insured or his or her dependent or an asymptomatic applicant or his or her asymptomatic dependent to undergo a genetic test or disclose whether a genetic test has been conducted, the results of a genetic test or genetic information.

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.

Minnesota Privacy, Use of Residual Newborn Screening Specimens Statute

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

Minnesota Use of Residual Newborn Screening Specimens Statute

During the period in which residual newborn screening specimens is retained, the health department may use blood samples and test results for newborn screening program operations. Newborn screening operations are defined to specifically exclude research, public health studies, or the development of new newborn screening tests.

Minnesota Privacy, Research Statute

The health commissioner may collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection of human subjects in Code of Federal Regulations, title 45, part 46. Biological specimens is defined as tissue, fluids, excretions, or secretions that contain human DNA originating from an identifiable individual, either living or deceased.

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.

Minnesota Employment Nondiscrimination Statute

Employers or employment agencies may not administer a genetic test or request, require, or collect protected genetic information as a condition of employment or affect the terms or conditions of employment or terminate the employment of any person based on protected genetic information. A person may not provide or interpret genetic information on a current or prospective employee for an employer or employment agency. An aggrieved person may bring a civil action.

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.

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.

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.

Missouri Use of Residual Newborn Screening Specimens Statute

A residual newborn screening specimen is retained for five years after initial submission to the department. After five years specimens are destroyed. Unless otherwise directed, a biological specimen may be released for anonymous scientific study. At the time of collection, the parent or legal guardian of the child from whom a biological specimen was obtained may direct the department to: (1) Return a biological specimen that remains after all screening tests have been performed; (2) Destroy a biological specimen in a scientifically acceptable manner after all screening tests required have been performed; or (3) Store a biological specimen but not release the biological specimen for anonymous scientific study. A biological specimen released for anonymous study may not contain information that may be used to determine the identity of the donor. The department has authority over the use, retention, and disposal of biological specimens and related information collected in connection with newborn screening tests. The use of such specimens and related information is for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for the use of such specimens for public health research and preparing and supplying specimens for research proposals approved by the department.

Missouri Health Insurance Nondiscrimination Statute

An insurer in making any underwriting decision may not (1) require or request a person or his/her blood relative to provide genetic information or take a genetic test, (2) inquire about a genetic test or what the results of any such test were unless given approval by that person, or (3) consider without the approval of such person the fact that genetic information or a genetic test was taken or refused by a person or blood relative of the person or the results of a test. A violation is an unfair trade practice. The law does not apply to any policy, contract or certificate of life insurance, reinsurance, disability income or long-term care coverage.

Missouri Employment Nondiscrimination Statute

An employer may not use genetic information or genetic test results of an employee or prospective employee to distinguish between, discriminate against, or restrict any right or benefit otherwise due or available to such employee or prospective employee. Exceptions are provided for the underwriting of group life, disability income and long-term care insurance, actions required by law or regulation, action taken with written permission of an employee or prospective employee, and the use of genetic information when it is directly related to job performance and assigned responsibilities.

Missouri Privacy, Research Statute

This section of the law is applicable to all insurance companies. A person who creates, stores, receives or furnishes genetic information must hold such information as confidential medical records and must obtain written authorization to disclose genetic information. Exceptions include statistical data compiled without reference to the identity of an individual, health research conducted in accordance with the provisions of the federal Common Rule, and health research using medical archives or databases in which the identity of individuals is protected from disclosure by coding or encryption, or by removing all identities. The director of insurance has the authority to enforce these provisions.

Missouri Health Insurance Nondiscrimination Statute

A health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility of any individual to enroll under the terms of the group health plan based on health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A small employer carrier may apply reasonable criteria in determining whether to accept a small employer into a class of business, provided that the criteria are not based on a health status-related factor, including genetic information.

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.

Montana Health Insurance Nondiscrimination, Research Statute

An insurer, health service corporation, health maintenance organization, fraternal benefit society, or other issuer of an individual or group policy or certificate of insurance may not discriminate based on a persons genetic traits. These entities also may not underwrite or condition coverage on a requirement or agreement to take a genetic test or on genetic information of an individual or his or her family member, and they may not seek genetic information for a purpose that is unrelated to assessing or managing ones health, inappropriate in an asymptomatic individual, or unrelated to research in which a subject is not personally identifiable. These entities may not require an individual to obtain a genetic test also with some exceptions. The law does not apply to life, disability income or long-term care insurance.

Montana Health Insurance Nondiscrimination Statute

A group health plan or a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information. A group health plan or a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility of any individual to enroll under the terms of the group health plan based on health status-related factors, including genetic information.

Nebraska Health Insurance Nondiscrimination Statute

Under the Small Employer Health Insurance Availability Act, health status-related factor is defined to include genetic information and pre-existing condition is defined to exclude genetic information in the absence of a diagnosis.

Nebraska Health Insurance Nondiscrimination Statute

A health benefit plan may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health carrier may not establish rules for eligibility and continued eligibility of any individual to enroll under the terms of the health benefit plan based on a health status-related factor, including genetic information.

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.

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.

Nebraska Employment Nondiscrimination Statute

An employer may not discriminate against an employee or applicant because of genetic information that is unrelated to the ability to perform the duties of a particular job or position. An employer also may not require an employee or applicant to submit to a genetic test or to provide genetic information as a condition of employment or promotion. An employee may voluntarily submit genetic information that is related to heath and safety in the workplace.

Nebraska Use of Residual Newborn Screening Specimens Statute

The health department must adopt and promulgate rules and regulations relating to the use_of_residual_newborn_screening_specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department. The health department also must develop a pamphlet which explains that residual newborn blood specimens may be used for approved public health research.

Nebraska Privacy Statute

A physician or an individual to whom the physician has delegated authority to perform a selected act, task, or function may not order a predictive genetic test without prior written informed consent and in the manner specified with some exceptions such as newborn screening. The health department must develop a model informed consent form that, if used, bars the person tested from bringing any civil action on the basis that consent was not obtained.

Nebraska Employment Nondiscrimination Statute

In order for a company to be eligible for the wage benefit credit or the investment tax credit under the Invest Nebraska Act, the company must file an application for an agreement with the board, which must contain a copy of the written policy of the company prohibiting the company, as required by law, from requiring as a condition of employment or promotion at the project that an employee or an individual applying for employment at the project submit to a genetic test or provide genetic information outside of the scope of normal blood testing.

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.

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.

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.

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.

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.

New Hampshire Use of Residual Newborn Screening Specimens Statute

Samples may not be used for other research or DNA testing purposes unless authorized by the parent or guardian.

New Hampshire Privacy Statute

No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute.

New Hampshire Privacy Statute

No individual or his/her family member may be required to undergo genetic testing as a condition of doing business with another person. Genetic testing may not be performed on any individual or anywhere on any resident of the state based on bodily materials obtained within the state without prior written and informed consent with some exceptions. Additional provisions address disclosure of results. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Employment Nondiscrimination Statute

No employer, labor organization, employment agency, or licensing agency may (1) solicit, require or administer genetic testing, or (2) affect the terms, conditions, or privileges of, or terminate employment, membership, or licensure based on genetic testing. A person may not sell or provide to these entities any genetic testing relating to an existing or prospective employee, member or licensee unless for the purpose of workers compensation or biomonitoring of workplace toxins and with informed consent. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Health Insurance Nondiscrimination Statute

A health insurer in connection with providing health insurance may not (1) require or request an individual or family member to undergo genetic testing, whether a test was taken or the results of the testing, (2) condition the provision of health_insurance_coverage or health care benefits on whether an individual or family member has undergone genetic testing or the results of the testing, or (3) consider in the determination of rates or any other aspect of health_insurance_coverage or benefits whether an individual or family member has undergone genetic testing or the results of the testing. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Other Lines of Insurance Nondiscrimination Statute

A person in the business of providing life, disability income, or long-term care insurance who obtains information about genetic testing of an individual or a family member may not use that information in writing a type of insurance coverage other than life, disability income, or long-term care insurance. An aggrieved individual may bring a civil action.

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.

New Jersey Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

No person may discriminate against an individual based on genetic information or the refusal of a genetic test with respect to hospital confinement or other supplemental limited benefit insurance. No person may make or permit any unfair discrimination against an individual in the application of the results of a genetic test or genetic information with respect to life insurance, including credit life insurance, an annuity, disability income insurance contract or credit accident insurance coverage, and, if results of a genetic test as permitted by these entities, the insurer must notify the individual who is the subject of the test that it is required and obtain the individual's prior written informed consent. The insurance commissioner has the authority to enforce these provisions.

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.

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.

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.

New Jersey Health Insurance Nondiscrimination Statute

A group health plan may not establish rules for eligibility or continued eligibility based on health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. Health status-related factor also is defined to include genetic information applicable to sections 1 to 15 of chapter 17B:27A, and the definition of pre-existing condition excludes genetic information in the absence of a diagnosis under provisions applicable to small employer health benefit plans.

New Mexico Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research Statute

The statutes contain provisions on the acquisition, collection, retention, transmission or use of genetic information. Consent requirements provide an exemption (1) if DNA, genetic information or results of genetic analysis are not identified with the person or person's family members or (2) for the purpose of medical or scientific research and education (including retention of gene products, genetic information or genetic analysis if the identity of the person or person's family members is not disclosed.) Discrimination by an insurer against a person or his/her family member based on genetic analysis, genetic information or genetic propensity is prohibited. Life, disability income or long-term care insurance are exempt if use is based on sound actuarial principles or related to actual or reasonably anticipated experience. Upon request a persons genetic information or samples must be promptly destroyed with some exceptions, including if retention is authorized under a research protocol approved by an institution review board pursuant to federal law. It is unlawful for a person to use genetic information in employment or recruiting. A person whose rights under the provisions of the Genetic Information privacy Act have been violated may bring a civil action for damages or other relief.

New Mexico Other Topics Statute

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

New Mexico Health Insurance Nondiscrimination Statute

A health benefit plan that is offered by a carrier or an approved health plan offered to a small employer and plans subject to the Health Insurance Portability Act may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A group health plan and a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based a health status-related factor, including genetic information. A group health benefits plan or a health insurance issuer that offers group health_insurance_coverage in connection with a group health benefits plan from adjusting premiums or contribution amounts for the group covered under the plan on the basis of genetic information. Under the Small Group Rate and Renewability Act, provisions allowing a carrier to use health status in establishing the amount an employer may be charged for coverage under a group health plan exclude genetic information from the definition of health status.

New York Research Statute

The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

New York Employment Nondiscrimination Statute

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

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.

New York Employment Nondiscrimination Statute

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work.

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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