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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 ascending Primary Link Topic(s) Bill Status Summary
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.

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.

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 Coverage Statute

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.

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 Health Insurance Coverage Statute

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. 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.

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 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.

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 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.

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 Statute

Prohibits life and long-term care insurers, in determining eligibility for coverage, establishing premiums, limiting coverage, or making any other underwriting decisions from doing the following: (1) taking into consideration the fact that an individual or a family member of the individual participated in genetic research, including any request for or receipt of genetic services or participation by an individual or family member in clinical research that includes genetic services, unless the results of that genetic research are included in the individual's medical record or provided by the individual for consideration by the insurer; or (2) requiring or requesting an individual or a family member of the individual to take a genetic test. Additionally prohibits life and long-term care insurers from canceling or refusing to renew an existing policy based on (1) the fact that an individual or a family member of the individual requested or received genetic services; (2) the fact that an individual or a family member of the individual participated in genetic research, including clinical research that includes genetic services; or (3) purchasing genetic information about an individual without the individual's written consent. Insures may consider genetic information contained in an applicant's medical record if the information is relevant to a potential medical condition that impacts mortality or morbidity, and consideration of the genetic information is based on sound actuarial principles or reasonably expected experience.

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 Employment Nondiscrimination, Research Statute

An employer, labor organization, or employment agency may not (1) discriminate against any employee based on genetic information, (2) require, collect, purchase, or disclose genetic information or information about a request or receipt of genetic services with respect to an employee, or (3) maintain genetic information or information about a request for or the receipt of genetic services in general personnel files. Exceptions regarding disclosure include disclosure to an occupational or other health researcher if the research complies with Part 46 of Title 45 of the Code of Federal Regulations. Additional prohibitions apply to labor organizations with respect to membership and to employers, labor organizations and employment agencies with respect to training. Employers, employment agencies and labor organizations also may not discriminate because an individual has sickle cell trait.

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.

Louisiana Employment Nondiscrimination Died

This bill changes the person in charge of promulgating regulations for genetic monitoring from the executive director of the Louisiana Workforce Commission to the chairman of the Louisiana Commission on Human Rights. Measure failed.

Louisiana Employment Nondiscrimination Died

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes in present law, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell trait, and genetic information. Died.

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.

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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