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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
Oklahoma Health Insurance Coverage Died

This bill requires individual and group health insurers that provide coverage on an expense-incurred basis to provide reimbursement not to exceed $115 for mammography screening any female under 35 with a genetic predisposition to breast cancer. Measure failed.

Oklahoma Health Insurance Nondiscrimination, Research Statute

Any individual, corporation, association, partnership, insurance support organization, fraternal benefit society, insurance producer, third-party administrator, self-insurer, or any other legal entity engaged in the business of insurance that issues accident and sickness insurance policies or administers a health insurance plan may not deny or condition the issuance or effectiveness of a policy on a pre-existing condition or genetic information. These entities also may not discriminate with respect to pricing a policy or certificate, including premiums, based on genetic information. A violation is an unfair and deceptive act or practice. An insurer also may not request or require a genetic test with an exception for research. An insurer may request a genetic test if the request is pursuant to research that complies with the Common Rule and other specified criteria are met.

Oklahoma Employment Nondiscrimination Died

This bill amends statutes pertaining to discriminatory practices in employment, housing, and public accommodations. The bill provides exclusive remedies for individuals alleging discrimination in employment on the basis of genetic information. Measure failed.

Oregon Health Insurance Nondiscrimination Died

Creates new provisions related to statewide coverage of health care. Renumbers sections of existing that which define pre-existing conditions, which does not include genetic information in the absence of a diagnosis of a condition related to the information. Died.

Oregon Health Insurance Coverage Died

A health benefit plan offered in Oregon must provide coverage for BRCA testing, if indicated. Died.

Oregon Health Insurance Nondiscrimination, Privacy Enacted

This bill amends the state genetic privacy law by allowing health insurers to retain or disclose genetic information without written authorization if (1) the retention is for treatment, payment or health care operations by the insurer; and (2) the disclosure is in accordance with ORS 746.607 (3). Signed by the Governor July 17, 2007.

Oregon Privacy Enacted

This bill amends the state genetic privacy law by designating the Oregon Health Authority (previously the Department of Health and Human Services) as the body responsible for certain provisions of the law. Signed by the Governor June 26, 2009.

Oregon Health Insurance Nondiscrimination Died

This bill creates the Oregon Health Insurance Exchange and prohibits the treatment of genetic information in the absence of a diagnosis as a pre-existing condition in the exchange. Measure failed.

Oregon Health Insurance Nondiscrimination Enacted

Aligns Oregon health insurance law with changes in federal law and renumbers sections of Oregon law pertaining pre-existing condition, which are defined not to include genetic information in the absence of a diagnosis of the condition related to such information. 7/29/13 Signed by the Governor.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Oregon Health Insurance Coverage Enacted

A health benefit plan offered in Oregon must provide coverage for screening to determine whether counseling about BRCA testing is indicated. Governor signed. Effective 8/15/2017.

Pennsylvania Coverage and reimbursement Approved

An Act amending the act of May 17, 1921 (P.L.682, No.284), known as The Insurance Company Law of 1921, in casualty insurance, further providing for coverage for mammographic examinations and diagnost...

Pennsylvania Genetic Data & Law Enforcement Introduced

An Act amending Title 23 (Domestic Relations) of the Pennsylvania Consolidated Statutes, adding provisions relating to establishment of parent-child relationship for certain individuals; providing fo...

Rhode Island Privacy Died

Enacts the Consumer Protection privacy Act. Establishes consumer protections pertaining to the collection and use of personal information, including an individual's DNA, by businesses. Died.

Rhode Island Health Insurance Coverage Died

Requires nonprofit hospital service contract, plan, or insurance policy delivered, issued for delivery, or renewed in this state must provide coverage of all blood testing services, including specified genetic tests. Died.

Rhode Island Privacy Died

Creates the Consumer privacy Protection Act. Establishes requirements for the collection, use, sale, retention and disclosure of personal information by businesses. Personal information is defined to include biometric information such as DNA. Died.

Rhode Island Health Insurance Coverage Statute

Every individual or group hospital or medical insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state shall pay for two (2) screening mammograms per year when recommended by a physician for women who have been treated for breast cancer within the last five (5) years or are at high risk of developing breast cancer due to genetic predisposition (BRCA gene mutation or multiple first degree relatives) or high risk lesion on prior biopsy (lobular carcinoma in situ) or atypical ductal hyperplasia.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 2/23/2021 Committee recommended measure be held for further study. Died.

Rhode Island Employment Nondiscrimination Statute

An employer, employment agency, or licensing agency may not (1) request, require or administer a genetic test, (2) affect the terms, conditions, or privileges of or terminate employment or licensure of any person who obtains a genetic test, (3) take any other action affecting the terms, conditions or privileges of employment against an employee or a license holder based on the results of a genetic test or the refusal to take a genetic test, submit family history, or reveal whether the employee, applicant or holder has taken a genetic test, (4) otherwise use genetic information to adversely affect the employment, licensure, or application for employment or licensure of any individual, or (5) reveal genetic information about employees, licensees, or applicants. Penalties for violations are set forth.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 4/1/2021 Committee recommended measure be held for further study. Died.

Rhode Island Health Insurance Nondiscrimination, Privacy, Research Statute

Insurance administrators, health plans and providers of accident and sickness insurance, nonprofit hospital corporations, nonprofit medical service corporations, and HMOs are prohibited from releasing genetic information without prior written authorization. Individuals participating in research settings governed by the Federal Policy for the Protection of Human research Subjects are exempt. Tests conducted purely for research are excluded from the requirements set forth, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. An individual or group health insurance contract, plan or policy (excluding disability income, long term care and insurance supplemental policies) may not use a genetic test or genetic information or request for genetic tests or genetic information or the results of a genetic test for specified purposes, including for underwriting. Provisions pertaining to the release the results of a genetic test or genetic information do not apply to releases in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. Authorization is required for each re-disclosure except for participating in research settings governed by the Federal Policy for the Protection of Human research Subjects.

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.

Rhode Island Consumer Personal Data Privacy, Coverage and reimbursement Introduced

An act relating to insurance -- accident and sickness insurance policies (mandates insurance policies, provides coverage to diagnose & treat infertility for women between 25 & 42 years, including pre...

Rhode Island Coverage and reimbursement Passed Senate

An act relating to insurance -- accident and sickness insurance policies (mandates all insurance contracts/plans/policies provide coverage for the expense of diagnosing/treating infertility for women...

South Carolina Health Insurance Nondiscrimination, Privacy Statute

An accident and health insurer providing hospital, medical and surgical, or major medical coverage on an expense incurred basis, providing a corporate health services plan, or providing a health care plan for health care services by a health maintenance organization may not (1) terminate, restrict, limit, or otherwise apply conditions to coverage or restrict the sale to an individual, (2) cancel or refuse to renew the coverage of an individual, (3) exclude an individual from coverage, (4) impose a waiting period, (5) impose a pre-existing condition exclusion; (6) require inclusion of a rider that excludes coverage for certain benefits and services, or (7) adjust premium contribution amounts or establish differential in premium rates for coverage based on genetic information or a request for genetic services. Additional provisions address consent to disclose genetic information and consent to perform genetic testing. An aggrieved individual may bring civil action. he penalties and enforcement provisions of subsections (A) and (B) are in addition to penalties and enforcement provisions of federal law, including those set forth in the Genetic Information Nondiscrimination Act of 2008.

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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