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

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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 Sort descending Primary Link Topic(s) Bill Status Summary
Hawaii Privacy Pending

Amends the definition of personal information for the purpose of applying modern security breach of personal information law. Personal information is defined as an identifier in combination with one or more specified data elements. Specified data elements include a deoxyribonucleic profile. Carries over to 2022 session.

Idaho Other Topics Died

Worker's compensation is payable for disability or death of an employee resulting from occupational diseases, including breast cancer, if certain criteria are met. Criteria includes: (1) diagnosis of breast cancer after five years of employment, before the age of 40, without BRCA 1 or BRCA 2 genetic predisposition; and (2) the disease must not have been revealed during an initial employment medical screening exam or during any subsequent medical review. Died.

Idaho Privacy Died

Regulates the collection, possession and disclosure of biometric identifiers, defined to include human DNA, by private entities. Died.

Idaho Other Topics Died

If a firefighter is diagnosed with breast cancer within 5 years of employment if diagnosed before the age of 40 and if the cancer was not revealed during an initial employment medical screening examination or during any subsequent medical review, the disease shall be rebuttably presumed to be proximately caused by the firefighter's employment as a firefighter, regardless of whether or not the firefighter has a genetic predisposition to breast cancer. Died.

Idaho Privacy Died

Unless explicitly mandated by federal statute, a state agency, district or education institution must obtain written consent from parents or eligible students before collecting biometric records, defined to include a DNA sequence. Died.

Idaho Employment Nondiscrimination, Privacy Statute

An employer may not (1) access or otherwise take into account private genetic information, (2) request or require consent to a release of private genetic information, (3) request or require a genetic test, or (4) inquire about taking or refusal to take a genetic test in connection with a hiring, promotion, retention or other related decision. An exception is made under certain circumstances for an order compelling disclosure of private genetic information.

Idaho Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

With respect to disability insurance or any health benefit plan, no person may discriminate on the basis of a genetic test or private genetic information in the issuance of coverage or the fixing of rates, terms or conditions.

Idaho Other Topics Enacted

If a firefighter is diagnosed with breast cancer after a five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present. Signed by Governor on March 30, 2016. Effective: 07/01/2016.

Idaho Other Topics Statute

If a firefighter is diagnosed with breast cancer after five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present.

Idaho Health Insurance Nondiscrimination Statute

General managed care plans and health benefit plans covering large and small employers may not treat genetic information in the absence of a diagnosis as a pre-existing condition.

Idaho Health Insurance Nondiscrimination Died

The bill amends the state genetic nondiscrimination law by prohibiting discrimination on the basis of genetic information or a genetic test in the issuance of coverage, or the fixing of rates, terms or conditions, for any policy or contract of hospital or medical insurance or any health benefit plan. Measure failed.

Illinois Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

Illinois Privacy Died

Amends the School Code to add provisions concerning student and educator data privacy. Protections cover biometric records, defined to include DNA. Died.

Illinois Health Insurance Coverage Statute

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.

Illinois Employment Nondiscrimination, Privacy Enacted

Amends the state genetic nondiscrimination law for employment. An employer may not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information. 8/25/2017 Approved by the Governor. Effective 1/1/2018.

Illinois Privacy Died

Amends the Personal Information Protection Act. Provides that individuals and entities have intellectual property rights in their digital identity assets. Provides for the payment of royalties to individuals and entities for access, for the purpose of commercial advertising, to their digital assets. Digital assets include, but are not limited to, information accumulated regarding an individual's or entity's personal information. Personal information includes medical history such as RNA and DNA profiles and genetic history. Carries over to 2022 session.

Illinois Privacy Died

Requires health insurance providers to protect health information related to sensitive services. A 2016 House Amendment would define sensitive services to include genetic testing. Died.

Illinois Health Insurance Nondiscrimination Statute

A group health plan and a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

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 Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died.

Illinois Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Statute

Genetic information may only be released to the individual tested and to other authorized persons with a few exceptions. An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance, and an insurer that receives this information may not use it for non-therapeutic purposes unless the favorable results of a genetic test are voluntarily submitted. An employer, employment agency, labor organization, and licensing agency must treat genetic testing and genetic information in a manner that is consistent with federal law, including but not limited to the Genetic Information Nondiscrimination Act of 2008. Prohibited actions by employers, employment agencies and labor organizations are specified. No person may disclose the identity of any person upon whom a genetic test is performed or the results of a genetic test in a manner that permits identification of the subject of the test with some exceptions. A company providing direct-to-consumer genetic testing must obtain consent from the individual tested to share genetic information with any health or life insurance company.

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 Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures for treatment, payment, health care operations, health oversight activities, and public health activities; uses and disclosures of information to a health information exchange; business associates; and establishment and disclosure of limited data sets and de-identified information. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died.

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.

Illinois Employment Nondiscrimination, Privacy Died

This bill amends the Genetic Information privacy Act and makes technical changes to the section of the law pertaining to employers. Measure failed.

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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. 

  • 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: September 14, 2023