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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.

Search

State Sort descending Primary Link Topic(s) Bill Status Summary
Oklahoma Use of Residual Newborn Screening Specimens Statute

Parental consent is required to store, transfer, use or database DNA from any newborn child.

Oklahoma Privacy, Use of Residual Newborn Screening Specimens Statute

Creates the Parents' Bill of Rights, including the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order.

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.

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 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 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 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.

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.

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 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...

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...

South Carolina Health Insurance Nondiscrimination Statute

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

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.

South Carolina Privacy Pending

Enacts the South Carolina Biometric Data privacy Act. Provides certain requirements for a business that collets a consumer's biometric information. Allows consumers to: (1) request the deletion of collected biometric information; and (2) prohibit the sale of biometric information. Prohibits a business from discriminating against a consumer who opts out of the the sale of biometric information. Biometric information includes DNA. Carries over to 2022.

South Carolina Health Insurance Nondiscrimination, Privacy, Research Enacted

This bill amends existing statute sections and creates new statute sections pertaining to health_insurance_nondiscrimination, genetic privacy, research issues and enforcement of these provisions. Signed by the Governor on June 7, 2010.

South Carolina Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Carries over to 2022.

South Carolina Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Carries over to 2022.

South Carolina Health Insurance Nondiscrimination, Privacy, Research Died

This bill amends existing statute sections and creates new statute sections pertaining to health_insurance_nondiscrimination, genetic privacy, research issues and enforcement of these provisions. Measure failed.

South Carolina Health Insurance Coverage Died

Existing law requires individual and group health insurers to cover mammograms. This bill requires that Coverage for mammograms required in subsection (A)(1) must include benefits for comprehensive ultrasound screening of an entire breast or breasts if a mammogram demonstrates heterogeneous or dense breast tissue based on: (a) the Breast Imaging Reporting and Data System established by the American College of Radiology; or (b) if a woman is believed to be 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 physician or advanced practice registered nurse. Died.

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.

South Carolina Privacy Died

Sets forth requirements for the collection and use of consumer biometric information by businesses. Biometric information is defined to include an individual's DNA. Died.

South Carolina Use of Residual Newborn Screening Specimens Statute

Residual newborn screening blood samples may be released for purposes of confidential, anonymous scientific study unless the newborn screening program is otherwise directed. The release of a blood sample must conform with departmental regulations. At the time of testing or at any time after that, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to: (1) return a blood sample in its entirety and any test results not less than two years after the date of testing; (2) destroy a blood sample in not less than two years after the date of the testing; or (3) store a blood sample but not release the blood sample for confidential, anonymous scientific study. A blood sample released for confidential, anonymous study must not contain identifiable information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information.

South Dakota Health Insurance Nondiscrimination Died

This bill prohibits pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

South Dakota Health Insurance Nondiscrimination Died

As introduced, this bill included a provision that prohibited pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

South Dakota Health Insurance Nondiscrimination Died

This bill repeals the authority of the director of the Division of Insurance to promulgate rules governing use of genetic information and enacts certain provisions regarding the use of genetic information. Measure failed.

South Dakota Privacy Statute

Informed written consent consisting of the information specified in the statute is required prior to ordering a predictive genetic test. The person to be tested must receive a signed copy of the form, which also must be placed in the medical record. Tests performed per a court order or for a criminal investigation are exempt.

South Dakota Health Insurance Nondiscrimination Enacted

This bill amends the definitions used in the health_insurance_nondiscrimination law. Signed by the Governor March 8, 2011.

South Dakota Health Insurance Coverage Died

Every policy of group or individual health insurance, each service or indemnity-type contract issued by a nonprofit medical or surgical service plan corporation and each health maintenance contract that covers a female, that is delivered, issued for delivery, or renewed in South Dakota, and that provides coverage for occult breast cancer screening must provide additional benefits for (1) comprehensive ultrasound screening 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 a woman is believed to be at an 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 physician or advanced practice registered nurse; and (2) magnetic resonance imaging in accordance with guidelines established by the American Cancer Society or the American College of Radiology or if a woman is believed to be at an 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 physician or advanced practice registered nurse. Died.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Statute

A health carrier, long-term care insurer or life insurer from requiring or requesting an individual or his/her blood relative to take a genetic test or consider the fact that a genetic test was refused in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision in connection with the offer, sale, or renewal of health insurance. The insurance director may promulgate rules concerning genetic information and group health benefit plans. In individual, group and blanket health insurance plans, genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. Small employer carriers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Enacted

Existing law prohibits health carriers, in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision from, in connection with the offer, sale, or renewal of insurance: (1) requiring or requesting an individual or a blood relative of the individual to take a genetic test; or (2) taking into consideration the fact that a genetic test was refused by an individual or a blood relative of the individual. Amends existing law by adding life insurers and long-term care insurers to covered entities. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted. 3/29/2021 Signed by the Governor. Effective 1/1/2022.

South Dakota Privacy Died

This bill establishes certain rights of parents regarding the upbringing, education, health care, and mental health care of their children and provides certain penalties for the violation of those rights. Rights set forth include the right to consent in writing before any record of a minor child's blood or deoxyribonucleic acid is created, stored, or shared. Died.

South Dakota Employment Nondiscrimination Statute

An employer may not to seek to obtain, obtain, or use genetic information of a current or prospective employee discriminate or restrict any right or benefit otherwise due or available to an employee or a prospective employee. A few exceptions are provided such as if the employer uses the test results for the limited purpose of taking disciplinary action against the employee based only on alleged misconduct. Any employee or prospective employee claiming to be aggrieved by an unlawful employment practice may bring a civil suit.

Tennessee Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Tennessee Privacy Died

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

Tennessee Privacy Died

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

Tennessee Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Tennessee Other Topics Pending

Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/30/2021 Deferred for summer study in Health Subcommittee.

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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