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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.

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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