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Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Summary
Illinois Other Lines of Insurance Nondiscrimination Enacted

A company providing direct-to-consumer commercial genetic testing is prohibited from sharing genetic test information or other personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer. Direct-to-consumer genetic tests are added to the definition of genetic test under the Genetic Information privacy Act. 7/26/2019 Public Act. Effective January 1, 2020.

Illinois Health Insurance Coverage Enacted

An individual or group health care service plan contract that is issued, amended, delivered, or renewed on or after January 1, 2022 may not require prior authorization for biomarker testing for an insured with advanced or metastatic stage 3 or 4 cancer, nor shall prior authorization be required for biomarker testing of cancer progression or recurrence in the insured with advanced or metastatic stage 3 or 4 cancer. Biomarker testing is defined as analysis of tissue blood or fluid specimen for the presence of a biomarker. Biomarker testing includes, but not limited to, single-analyte tests, multiplex tests, and partial or whole genome sequencing. 7/30/21 Governor approved. Effective 1/1/2022.

Illinois Health Insurance Coverage Enacted

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. 8/27/21 Approved by the Governor. Effective 1/1/2022.

Indiana Health Insurance Nondiscrimination Enacted

The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor.

Iowa Employment Nondiscrimination Enacted

This bill adds definitions to the genetic nondiscrimination in employment law. Signed by the Governor April 29, 2010.

Iowa Health Insurance Nondiscrimination, Privacy, Research Enacted

This bill prohibits health insurers from discriminating 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. Signed by the Governor April 23, 2010.

Iowa Employment Nondiscrimination Enacted

This bill requires a health carrier to notify a covered person of the right to request an external review and include appropriate statements and information in the written notice of a final adverse decision. Health carriers also must include with the notice an authorization form or other document developed by the state that complies with the federal Genetic Information Nondiscrimination Act. Signed by the Governor on April 28, 2011.

Kansas Health Insurance Nondiscrimination Enacted

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved by the Governor April 15, 2010.

Kansas Health Insurance Nondiscrimination Enacted

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved March 22, 2010.

Kansas Privacy Enacted

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. Approved by Governor on Wednesday, May 14, 2014.

Kentucky Privacy Enacted

The bills governs the use of personal information by state institutions. The definition of personal information includes a biometric or genetic print. Signed by the Governor on April 10, 2014.

Kentucky Health Insurance Coverage Enacted

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network. Signed by the Governor on May 19, 2019. Effective January 1, 2020.

Louisiana Coverage and reimbursement Enacted

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

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 Employment Nondiscrimination Enacted

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell traits, and genetic information. Signed by the Governor on June 19, 2014.

Louisiana Health Insurance Nondiscrimination Enacted

Amends the genetic nondiscrimination in health insurance statute by establishing exemptions to the law. The bill provides that the requirements under existing law do not apply to genetic information obtained: (1) For treatment, payment, and healthcare operations by an insurer consistent with the federal Health Insurance Portability and Accountability Act (HIPAA) and its related regulations. (2) For maintenance of information by an insurer in accordance with record retention requirements. 5/10/2016 Signed by the Governor. Becomes Act No. 58. Effective 8/1/2016.

Louisiana Other Topics Enacted

Requires companies who sell DNA testing kits to inform a purchaser of certain information. This includes a written statement to inform the consumer that, by submitting DNA for testing, one loses the exclusive right to one's DNA. 5/30/2018 Signed by the Governor. Becomes Act No. 571. Effective 8/1/2018.

Louisiana Health Insurance Coverage Enacted

Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations. Signed by the Governor June 5, 2019. Effective January 1, 2020.

Louisiana Health Insurance Coverage Enacted

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for the treatment of a metastatic or unresectable tumor with a medically necessary drug on the sole 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. 6/11/2020 Signed by the Governor. Becomes Act No. 222. Effective 1/1/2021.

Louisiana Other Lines of Insurance Nondiscrimination Enacted

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. 6/11/21 Signed by the Governor. Becomes Act No. 242. Effective August 1, 2021.

Louisiana Health Insurance Coverage Enacted

Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. 6/1/21 Signed by the Governor. Becomes Act No. 45. Effective 1/1/2022.

Louisiana Health Insurance Coverage Enacted

Requires any health coverage plan renewed, delivered or issued for delivery in Louisiana to provide coverage for genetic or molecular testing for cancer including but not limited to tumor mutation testing, next generation sequencing, hereditary germline mutation testing, pharmacogenomic testing, whole exome and genome sequencing, and biomarker testing. 6/1/21 Signed by the Governor. Becomes Act No. 43. Effective 1/1/2022.

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 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 Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers from requesting, requiring, purchasing or using information obtained from a direct-to-consumer genetic test without consent of the individual tested. Types of insurance covered under the law would include life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance or an annuity. June 5, 2019 Signed by the Governor. Effective 90 days after adjournment on 6/19/19.

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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