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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 Sort ascending
Massachusetts Health Insurance Coverage Died

Individual or group policies of accident and sickness insurance, except policies providing supplemental coverage to Medicare or to other government programs, delivered, issued or renewed by agreement within or without the commonwealth must provide coverage for breast cancer screening technology, including, but not limited to, Magnetic Resonance Imaging (MRI) for high risk women. Coverage must be provided not less than once annually to women 25 years and older. High risk women, include, but are not limited to women who test positive for BRCA 1 or 2 or who have one or more first degree relatives that have tested positive for BRCA 1 or 2. Reporting date extended to Thursday July 31, 2014, pending concurrence. Died.

New Jersey Health Insurance Nondiscrimination Statute

Individual or group hospital service corporations and individual or group medical or health service corporations providing hospital or medical expense benefits, individual health insurance policies, group health insurance policies, and contracts for health care services may not exclude any person or eligible dependent or establish any rates or terms on the basis of any genetic characteristic.

Kentucky Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Statute

Individual or group health benefit plan or insurers may not (1) deny, cancel, or refuse to renew the benefits or coverage, or vary the premiums, terms, or conditions for the benefits or coverage, for any participant or beneficiary based on a genetic test for which symptoms have not manifested or a request or receipt of genetic services or (2) disclose any genetic test without prior authorization for each disclosure. A group or individual health benefit plan or insurer or a disability income insurer may not request or require the disclosure of any genetic test about a participant or beneficiary without prior written authorization for each disclosure.

Illinois Health Insurance Coverage Statute

Individual and group health insurers, health maintenance organizations and the Illinois Department of Healthcare and Family Services (for eligible individuals) must provide coverage for a mammogram and a screening MRI at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. Coverage for a comprehensive ultrasound screening of an entire breast or breasts also is required if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if the woman is at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's health care provider.

Texas Health Insurance Nondiscrimination, Privacy, Research Statute

Individual and group health benefit plans that request an applicant for coverage to submit to a genetic test for a permissible purpose must notify the applicant that the test is required, disclose to the applicant the proposed use of the results, and obtain prior written informed consent. A health benefit plan issuer may not use genetic information or the refusal of an applicant to submit to a genetic test to reject, deny, limit, cancel, refuse to renew, increase the premiums for, or otherwise adversely affect eligibility for or coverage under the plan. Genetic material obtained from an individual for a genetic test must be destroyed promptly after the purpose for which it was obtained with some exceptions, including (1) authorized retention of the sample for medical treatment or scientific research or (2) if the sample was obtained for research that is cleared by an institutional review board, and retention of the sample is under a requirement the institutional review board imposes on a specific research project or authorized by the research participant with institutional review board approval under federal law. A health benefit plan issuer may redisclose genetic information without authorization for actuarial or research studies if the tested individual could not be identified in any actuarial or research report and any materials that identify a tested individual are returned or destroyed as soon as reasonably practicable.

Massachusetts Health Insurance Coverage Statute

Individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract must provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing.

Virginia Health Insurance Nondiscrimination Statute

In the statutes pertaining to group health plans, health status-related factors are defined to include genetic information, and pre-existing condition exclusion may not be based on genetic information in the absence of a diagnosis.

Rhode Island Health Insurance Nondiscrimination Statute

In the statute sections pertaining to large group, individual health insurance and small employer health insurance a health status-related factor is defined to include genetic information, and pre-existing condition exclusions may not be based on genetic information the absence of a diagnosis.

Mississippi Health Insurance Nondiscrimination Died

In the group health market genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genet ic information. Measure failed.

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.

Wisconsin Health Insurance Nondiscrimination Died

In selecting patients with whom to enter into a direct primary care agreement, a health care provider may not discriminate on the basis of genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Nebraska Employment Nondiscrimination Statute

In order for a company to be eligible for the wage benefit credit or the investment tax credit under the Invest Nebraska Act, the company must file an application for an agreement with the board, which must contain a copy of the written policy of the company prohibiting the company, as required by law, from requiring as a condition of employment or promotion at the project that an employee or an individual applying for employment at the project submit to a genetic test or provide genetic information outside of the scope of normal blood testing.

New York Other Topics Enacted

In introduced version of the bill, a Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. 4/20/2017 Signed by the Governor Chapter 58. However, final version of the bill does not include provision related to genetic information.

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.

New York Privacy Pending

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Carries over to 2022.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Died.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. 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 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.

New Mexico Other Topics Statute

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

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.

New York Health Insurance Nondiscrimination Died

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Health Insurance Nondiscrimination Died

his bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

Colorado Health Insurance Nondiscrimination Statute

Health-status related factor is defined to include genetic information in Title 10 Article 16, which pertains to health care coverage.

South Carolina Health Insurance Nondiscrimination, Privacy Statute

Health insurers offering individual health plans may not cancel, deny, adjust premiums or rates or impose pre-existing conditions exclusions based on the genetic information of an individual or family member or based on a request for genetic services. Health insurers offering group health plans may not adjust premiums or contributions based on genetic information. Health insurers may not request or require genetic information or require an individual to undergo a genetic test. The law also prohibits disclosure of genetic information without informed written consent, with some exceptions such as for law enforcement purposes or as allowable under state and federal statutes. It is required to obtain informed consent prior to performing a genetic test, with some exceptions such as for diagnosis or treatment of an individual if performed by a clinical laboratory that has received a specimen referral from the individual's treating physician or another clinical laboratory. Penalties for violations of the law are established and are intended to be in addition to those set forth under the Genetic Information Nondiscrimination Act of 2008, Public Law 110-233.

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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