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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 Sort descending Summary
Wisconsin Privacy Died

Requires controllers of consumers' personal data to provide a consumer with copies of the consumer's personal data processed by the controller. Personal data includes genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

California Use of Residual Newborn Screening Specimens Died

This bill amends existing law pertaining to pregnancy blood samples. Existing law provides for the use of samples for approved research projects and establishes confidentiality and privacy protections with regard to samples and related personal information. This bill renames the term "pregnancy" blood samples by referring to them as "newborn" blood samples. Measure failed.

Florida Privacy Died

Enacts the Parents Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor 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. Died.

Kentucky Privacy Died

Requires certain information holders to encrypt personally identifiable data, which is defined to include a genetic print. Information holders must report a breach of personally identifiable information to consumers. Died.

Maryland Privacy Died

Establishes the Healthy Maryland Program. Requires the Board to establish requirements and standards to consistent with state nondiscrimination laws, including those pertaining to genetic information. Participating providers may not refuse to provide health care services on the basis of genetic information. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Missouri Research, Use of Residual Newborn Screening Specimens Died

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.

New Mexico Health Insurance Coverage Died

An individual or group health insurance policy, health care plan or certificate of health insurance that is delivered or issued for delivery in New Mexico must provide certain benefits that have, in effect, a rating of "A" or "B" in the current recommendations of the United States preventive services task force, for various services, including genetic counseling and evaluation for breast cancer BRCA-gene testing for women whose family histories are associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes. Died in Committee.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

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.

Washington Other Topics Died

Creates a study committee on human genome editing. Died.

Connecticut Other Topics Died

Requires a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of disease. Died.

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.

Maryland Other Topics Died

Creates the task force on pharmacogenomics to examine questions related to pharmacogenomics, including how the State can adopt genomic testing as the standard of care for patients. Died.

Connecticut Privacy Died

Establishes a framework for controlling and processing personal data. Establishes responsibilities and privacy protection standards for data controllers and processors. Grants consumers the right to access, correct, delete and obtain a copy of personal data and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data is defined as personal data that includes the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Died.

Illinois Privacy Died

Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died.

Maryland Privacy Died

This bill amends the Personal Information Protection Act, which governs the use of personal information contained in the records of certain businesses. The definition of personal information is amended to include an individual's unique biometric or genetic print. In the Senate. Died.

Massachusetts Privacy Died

Amends data security protections to include biometric information, which is defined to include genetic information. 10/26/2020 Accompanied a study order, see H5043. Died.

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not exclude genetic information as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/31/2017 Died in Committee.

New Jersey Other Topics Died

Establishes the New Jersey Pharmacogenomics Commission. Died.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, surgical or medical to cover screening for ovarian cancer, including genetic testing. Additional coverage is required if genetic testing is positive. Died.

Oklahoma Other Topics Died

The Office of Management and Enterprise Services must contract with a vendor to conduct a pilot project to determine incentives to both health care providers and patients for each care encounter in which the provider and patient incorporate genetic testing for ability to metabolize prescription drugs, drug testing of persons prescribed narcotics and other proven medical interventions made available and recorded through the program in the rendering and utilization of health care. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the establishment of rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, in Virginia share health insurance policies. This bill also prohibits pre-existing condition exclusions in these policies based on genetic information in the absence of a diagnosis of a condition related to such information. Measure failed.

California Employment Nondiscrimination Died

Prohibits licensing boards from requiring an examination or establishing any qualification for licensing that has an adverse impact on any class because of various attributes, including genetic information. Died.

Georgia Privacy, Use of Residual Newborn Screening Specimens Died

Prohibits the collection of student or family information by any state agency, local school system or educational institution, including biometric data (defined to include DNA sequence and newborn screening information), except as may be necessary to facilitate the instruction of special needs students or students participating in school physical education and athletic programs. Died.

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.

Maryland Privacy Died

Amends the definition of biometric information under the Maryland Data privacy act. The definition of biometric information referring to a genetic print is stricken. The revised definition of biometric information includes physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

Maryland Other Topics Died

Alters the definition of "practice pharmacy" to include the ordering and administering of certain laboratory tests. Requires the State Board of Pharmacy, on or before January 1, 2022, to adopt regulations authorizing a pharmacist to order and administer laboratory tests, without a written, oral or electronically transmitted prescription from an authorized prescriber that measure biomarkers, including deoxyribonucleic acid.

Minnesota Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill specifies that newborn screening activities are subject to state law on the collection, storage, use, and dissemination of genetic information. A new statute section also is created on the treatment of biological specimens and health data held by the health department and health boards. The new statute section allows the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection. Died.

Montana Health Insurance Nondiscrimination Died

Amends state health insurance law by deleting provision related to restrictions on pre-existing condition exclusions, including those based on genetic information. The new law would prohibit any pre-existing condition exclusions. Died.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on an insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Requires every personal information recipient to protect the security and integrity of all personal information in their custody from unauthorized access or unauthorized use. Places strict liability on companies where breaches of security allow for personal information to be compromised. Personal information is defined to include biometric information such as DNA. 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.

West Virginia Privacy Died

Provides that all parental rights are reserved to a parent of a minor child without obstruction or interference from this state, a political subdivision of this state, other governmental entity or other institution including, but not limited to, the right to consent before DNA is created, stored or shared. Died.

Massachusetts Privacy Died

Ensures patient privacy and control in health information exchanges by protecting health care information, including genetic information. 5/5/2016 Accompanied a study order, see H4242.

Minnesota Privacy Died

Establishes requirements with regard to collection, sale of, and access to personal information by businesses. Personal information is defined to include genetic information. Died.

New Hampshire Privacy Died

Provides that an individual has an expectation of privacy in personal information, including DNA/RNA and other identifying information unique to the individual. Died.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Privacy Died

Establishes the It's Your Data Act for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information. Biometric information, which is defined to include DNA, is considered protected information. Died.

Texas Health Insurance Nondiscrimination Died

Creates the Healthy Texas Program. The board for the program must create policies that promote nondiscrimination with respect to members and providers with regard to genetic information. Died.

Wisconsin Employment Nondiscrimination Died

Permits the Department of Workforce Development (DWD) or a person who has been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court to recover compensatory and punitive damages caused by the act of discrimination or unfair honesty or genetic testing after the completion of all administrative proceedings before DWD and the Labor and Industry Review Commission concerning the violation. Failed to pass pursuant to Senate Joint Resolution 1.

Arizona Health Insurance Coverage Died

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

Florida Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill amends Florida's health_insurance_nondiscrimination law. The bill removes the exemption for life, disability and long-term care insurance under existing law and states that the law applies to other lines of insurance. Died.

Iowa Health Insurance Nondiscrimination Died

Establishes the Healthy Iowa program. Residents of the state are entitled to enroll. Discrimination is prohibited with respect to members and providers based on genetic information. Died.

Maryland Health Insurance Nondiscrimination Died

Establishes the Healthy Maryland Program. Requires the Board to establish requirements and standards to consistent with state nondiscrimination laws, including those pertaining to genetic information. Participating providers may not refuse to provide health care services on the basis of genetic information. 3/28/2019 Unfavorable Report by Health and Government Operations. Withdrawn.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 11/30/2020 Reported out of Senate Conference Committee. See S2963 for report. Died.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

New Jersey Privacy Died

Exempts certain health information, including genetic information, contained in 9-1-1 calls from definition of government record. Died.

New York Other Topics Died

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. 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.

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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