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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
Montana Other Lines of Insurance Nondiscrimination Died

Creates the Montana family and medical leave insurance fund. Applicants for coverage must provide eligibility documentation. The department may not require documentation that exceeds the right to privacy allowed under HIPAA, the ADA and GINA. Died.

Maryland Privacy Died

Amends the Personal Information Protection Act by adding activity tracking data to the scope of protected information. Activity tracking data is defined to include genetic information; genetic samples; genetic tests of an individual or family member; and requests for or receipt of a genetic test, genetic counseling or genetic education. 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 Research Died

Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19.

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.

West Virginia Privacy Died

Creates a Longitudinal Data System, which links child care, student and workforce unit record data, and governing board of the system. The governing board must prohibit the collection of confidential information, which includes genetic information. Died.

Alabama Privacy Died

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Delaware Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based upon genetic characteristics and information in the issuance or renewal of disability and long term care insurance. Insurers also must provide notice if a genetic test is required. Died.

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. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Illinois Privacy Died

Amends the Genetic Information privacy Act. Requires informed consent for a person or business to disclose an individual's genetic information to third parties specifically for marketing, advertising, or sales purposes. 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.

Maryland Other Topics Died

Removes the ban on directly or indirectly advertising for or soliciting business for any medical laboratory, regardless of location, from anyone except a physician, hospital, medical laboratory, clinic, clinical installation, or other medical care facility. Died.

New Jersey Other Topics Died

Prohibits discrimination in health programs or activities based on certain factors, including genetic information. Died.

New York Employment Nondiscrimination Died

Prohibits clients and modeling agencies from subjecting a model to harassment based on various characteristics, including predisposing genetic characteristics, where such harassment has the purpose or effect of unreasonably interfering with an individual's provision of modeling services by creating an intimidating, hostile, or offensive environment. Died.

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.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

California Other Topics Died

Establishes the Commission on the State of Hate. Requires the commission to advise the Legislature, the Governor, and state agencies on, among other things, policy recommendations to promote intersocial education designed to foster mutual respect and understanding among California�s diverse population. Appointees to the commission are comprised of experts in combating hate, intolerance, and discrimination on the basis of various factors such as genetic information. Died.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Hawaii Health Insurance Nondiscrimination Died

The board of the Hawaii employer-union health benefits trust fund must require every health benefits plan established or contracted to include lower deductibles and co-payments for non-smokers of tobacco and other persons engaged in low risk health behaviors that are designed, in compliance with applicable federal and state laws, to encourage preventative health care, promote wellness, and discourage medically unnecessary use of health care services; provided that the board consults with medical professionals to determine what should be included as low risk health behaviors. Genetic factors and pre-existing medical conditions may not be considered as a behavior when determining what constitutes low risk behavior. Died.

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

Maine Privacy Died

The department of education, a school administrative unit or a state agency may not collect, store, transmit or process the certain information, including DNA, from a student without the written consent of a parent or guardian of a student or an eligible student unless otherwise required or authorized by statute or rule. Died.

New Hampshire Privacy Died

Declares that an individual's genetic information and DNA sample are the property of the individual. Committee Report: Referred to Interim Study, 05/05/2016.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

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.

Texas Other Topics Died

Proposes a Constitutional Amendment providing for the recognition of equal rights of all people. States that equality under the law may not be denied or abridged based on numerous factors, including 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.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

Utah Privacy Died

Provides consumers the right to access, correct, and delete certain personal data. Gives consumers the right to opt out of the collection and use of personal data for certain purposes. Requires certain businesses that control and process personal data of consumers to: safeguard personal data; provide clear information to consumers regarding how the consumer's personal data are used; accept consumer requests to exercise the consumer's rights under this bill; comply with a consumer's request to exercise the consumer's rights under this bill; and maintain data protection assessments. Creates a process for a consumer to submit requests and appeal a business's decision regarding the business's processing of the consumer's personal data. Allows the Division of Consumer Protection to accept and investigate consumer complaints regarding the processing of personal data. Creates a right for a consumer to know what personal information a business collects, how the business uses the personal information, and whether the business sells the personal information. Allows a consumer to require a business to delete personal information, with
exceptions, and direct a business that sells personal information to stop selling the consumer's personal information. 3/5/2021 Senate Filed. Died.

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.

Arizona Privacy Died

Allows the release of genetic testing and information derived from genetic testing to the following, if the necessary requirements are met: an individual or entity that provides services to a health care provider or clinical laboratory, a statewide health information exchange, the health insurance carrier of the person tested, a nationally recognized accreditation organization, a health professional licensing board in the state, and an entity that is responsible for the payment of a health care provider charges. Died.

Florida Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers and long-term care insurers from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on genetic information, if there is no diagnosis of a condition related to the genetic information. The bill also prohibits these insurers from requiring or soliciting genetic information, using genetic test results, or considering a person�s decisions or actions relating to genetic testing for any insurance purpose. 3/10/2018 Died in Rules.

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.

Kansas Privacy Died

The state board, the department of education, a unified school district or local education agency may not provide any personally identifiable information of any student or teacher, including a DNA sequence, to any federal agency, any Kansas state or local agency, state or local agency outside the state of Kansas, or any other organization or entity unless under specified circumstances. Died.

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.

Maryland Privacy Died

Amends the definition of personal information used in the state data privacy act. Personally identifiable information is defined to include an individual's DNA. 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.

Colorado Privacy Died

This bill requires a state agency or educational institution to obtain consent from parents or eligible students prior to collecting certain data, including biometric records. Biometric records are defined to include DNA. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. Died.

Hawaii Health Insurance Coverage Died

Requires individual policies of accident and health or sickness insurance to provide coverage for genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill prohibits group health benefit plans from imposing pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill prohibits an insurer from requesting or requiring a genetic test or from using a genetic test, the results of a genetic test, genetic information, or a request for genetic services to deny or limit life insurance coverage or benefits or to charge a different rate for the same coverage or benefits under an annuity contract; defining terms; and providing for an exception if the use is based on sound actuarial principles. Measure failed.

New Jersey Employment Nondiscrimination Died

This bill prohibits employers from (1) seeking to obtain or use a genetic test or genetic information, (2) requiring a genetic test or genetic information, (3) accessing or requesting or requiring consent to access genetic information, (4) requesting or requiring a genetic test from an individual or family member, or (5) inquiring about whether an individual or family member has taken or refused to take a genetic test. Civil penalties are set forth for violations. Measure failed.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

Connecticut Other Topics Died

Establishes a task force to require 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 such disease. 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.

Illinois Privacy Died

Amends the Genetic Information privacy Act. Makes a technical change in a section concerning the short title. 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.

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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