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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 Sort descending Primary Link Topic(s) Bill Status Summary
Louisiana Coverage and reimbursement Enacted

Provides for health_insurance_coverage of genetic testing for diseases and other medical conditions.

Louisiana Health Insurance Coverage Died

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for a medically necessary drug on the basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Died.

Louisiana Privacy, Research Enacted

This bill amends Louisianas genetic nondiscrimination in health insurance law. The definition of genetic information and genetic test is revised. The bill also prohibits health insurers from requesting, requiring or purchasing genetic information; requesting or requiring a genetic testing (with some exceptions); establishing rules for eligibility based on genetic information; adjusting premium or contribution amounts based on genetic information; or imposing a pre-existing condition exclusion based on genetic information. An insurer may request that an individual or a family member undergo a genetic test for research that complies with the Common Rule. Signed by the Governor July 7, 2009.

Louisiana Other Lines of Insurance Nondiscrimination Died

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. Died.

Louisiana Health Insurance Nondiscrimination, Privacy, Research Statute

The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth.

Maine Employment Nondiscrimination Statute

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information.

Maine Privacy Enacted

Protects the personal information, including genetic information, pertaining to state employees. Signed by the Governor on June 20, 2019.

Maine Privacy Died

Prohibits the collection, entry into an education database or maintenance of DNA by as education records by the department of education or school administrative unit. Died.

Maine Employment Nondiscrimination Statute

An employer may not fail or refuse to hire, discharge or otherwise discriminate against an employee or applicant for employment because of the individual's refusal to submit to a genetic test or refusal to provide the results of a genetic test, or based on the receipt of a genetic test or genetic counseling, except when based on a bona fide occupational qualification. The Maine Human Rights Commission has authority to enforce this provision.

Maine Employment Nondiscrimination Enacted

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information. 6/8/21 Signed by the Governor. Effective 90 days after adjournment (March 30, 2021).

Maine Health Insurance Nondiscrimination Died

In amended version, prohibits pre-existing condition exclusions in individual health plans but removes text referring to genetic information. Allows restricted enrollment in individual health plans during open enrollment periods and special enrollment periods in a manner consistent with federal law. Died.

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.

Maine Employment Nondiscrimination, Other Topics, Privacy Died

No member, officer, employee or agent of a municipal housing authority may knowingly divulge or disclose personnel information declared confidential with some specified exceptions. Personal information, including genetic information, is considered confidential. Died.

Maine Privacy Died

The department of education, a school administrative unit or a state agency may not collect, store, transmit or process the certain information, including DNA, from a student without the written consent of a parent or guardian of a student or an eligible student unless otherwise required or authorized by statute or rule. Died.

Maine Privacy Died

Clarifies that certain personal information of municipal employees is confidential and a record or portion of a record containing that information in the possession of a municipal government is not a public record. Personal information includes genetic information. Died.

Maine Health Insurance Coverage Died

As introduced, a health plan must provide coverage for risk assessment for a BRCA gene mutation and genetic counseling or testing, if necessary. Died.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

In the absence of a medical diagnosis of a disease, disorder or syndrome related to genetic information, a health insurer, life insurer or long-term care insurer may not cancel, limit or deny coverage or establish differentials in premium rates based on such genetic information. A health insurer, life insurer or long-term care insurer may not request, require, purchase or otherwise solicit genetic information; use genetic test results; or consider an individual's decisions or actions relating to genetic testing in any manner for any insurance purpose. 6/10/2021 Reports Read. On motion by Senator Sanborn of Cumberland the Majority Ought Not to Pass. Report accepted. In concurrence. Placed in Legislative Files. Died.

Maine Privacy, Research Statute

An individual's health care information, including information about individual cells or their components or genetic information, is confidential. Authorization is required to disclose this information other than to the individual by the health care practitioner or facility with some exceptions. The definition of health care information excludes information that protects the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.

Maine Privacy Died

Establishes annual registration of data brokers. Requires data brokers to develop, implement and maintain a comprehensive information security program to protect personally identifiable information. Personally identifiable information includes genetic identifiers. Ought Not to Pass Pursuant To Joint Rule 310, Jun 2, 2021.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Research Statute

A carrier that issues individual or group hospital, health or dental insurance and the Dirigo Health Self-administered Plan may not discriminate against an individual or eligible dependent on the basis of genetic information, the refusal to submit to a genetic test, refusal to make available the results of a genetic test, or based on the receipt of a genetic test or genetic counseling. A carrier may request, but not require, that an individual undergo a genetic test if the request is made pursuant to research that complies with the Common Rule and other specified criteria are met. Life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurers or an annuity may not (1) discriminate unfairly, which includes the use of genetic test results in a manner that is not reasonably related to anticipated claims experience, or (2) request, require, purchase or use information obtained from a direct-to-consumer genetic test without consent of the individual tested.

Maine Health Insurance Nondiscrimination, Research Enacted

This bill prohibits carriers of hospital, health or dental insurance from discriminating based on genetic information, refusal to submit to a genetic test or to make available the results of a genetic test, or on the basis that an individual or dependent received a genetic test or genetic counseling. A carrier may request but not require a genetic test pursuant to the Common Rule, or equivalent federal regulations and any applicable state or local laws, rules or regulations for the protection of human subjects in research and in compliance with specified conditions. Other provisions limit the ability of carriers to request, require or purchase a genetic information for certain purposes. Signed by the Governor and Public Law as of June 3, 2009.

Maine Privacy Died

Establishes consumer rights with respect to personal information collected by a business. Personal information includes biometric information. Biometric information is defined to include deoxyribonucleic acid. Died Between Houses, Jun 2, 2021.

Maine Privacy Statute

The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

Maine Health Insurance Nondiscrimination Enacted

This bill amends current health_insurance_nondiscrimination law by deleting provisions pertaining to pre-existing condition exclusions, including those pertaining to genetic information. The amendments prohibit pre-existing condition exclusions entirely to ensure that consumer protections provided under the Affordable Care Act are codified in state law. 3/19/2019 Signed by the Governor.

Maine Health Insurance Nondiscrimination Statute

An individual, group and blanket medical insurance contract subject to chapters 33 and 35 of Title 24A (with some exceptions) may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Group medical insurance contracts subject to chapter 35 of Title 24A (with some exceptions) may not establish rules for eligibility of an individual to enroll or require an individual to pay a premium or contribution that is greater than that for a similarly situated individual, based on genetic information.

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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