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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 Neonatal sequencing Approved

Revise laws related to collection of genetic material for newborn screenings.

New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

Texas Genetic data storage/privacy/sharing (industry) Approved

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

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...

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.

Washington Other Topics Died

Restricts genome editing of human embryos. Died.

Connecticut Health Insurance Coverage Died

Requires health_insurance_coverage, without any out-of-pocket expense, for: (1) diagnostic and screening mammograms, breast ultrasounds and magnetic resonance imaging of breasts for all insureds; (2) breast biopsies for all insureds, and (3) prophylactic mastectomies and breast reconstruction surgery for all insureds who have the harmful variant of breast cancer gene one (BRCA1), breast cancer gene two (BRCA2) or any similar gene variant that materially increases breast cancer risk. 1/27/2021 Referred to Joint Committee on Insurance and Real Estate.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage of screening breast ultrasounds and breast MRI, in addition to mammograms, if the patient is at increased risk of cancer based on certain factors such as positive genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Illinois Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Maryland Privacy Died

Allows the Motor Vehicle Administration to offer enhanced identification. An individual who applies for enhanced identification may be asked to provide biometric identification, which is defined to include DNA. Died.

New Hampshire Privacy Died

When an individual consents to receive assistance from a health or social service agency in the state, the consent given to the initial health or social service agency to use the individual's personal information may not be transferred to or retained by any other health or social service agency, network, or entity. No health or social service agency in the state may require a individual's consent to share personal information with another health or social service agency in the state or another state as a prerequisite for such individual to receive services from such health or social service agency, including consent to share details regarding which health or social service agency the individual has received help from in the past and associated information related to that interaction. A health or social service agency must explicitly and in writing inform any individual seeking such assistance that lack of consent will not affect the individual's ability to receive health or social services from the agency and that the individual will not be otherwise penalized. Personal information is defined to include DNA. Hearing on 2/08/2021. Carries over to 2022.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex; requires reporting certain information relating to the collection of data, and provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discriminatory housing practices based on protected status, which includes genetic information. Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to seek, obtain and hold employment without discrimination or abridgement on account of certain characteristics, including genetic information. Also prohibits insurers from refusing to insure or refusing to continue to insure an individual, limit the amount, extent, or kind of coverage available to an individual, or charge an individual a different rate for the same coverage, based on genetic information. School boards also must adopt a policy to establish that the local board of education and school personnel employed by the local board may not discriminate based on genetic information. Charter and nonpublic schools may not discriminate based on genetic information. Died.

Texas Privacy Died

Relates to the capture and use of an individual's biometric identifiers, specimen, or genetic information by a governmental body or peace officer or by a person for commercial purposes. Died.

Wisconsin Employment Nondiscrimination Died

Addresses actions in circuit court alleging discrimination in employment, unfair honesty testing, or unfair genetic testing. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

California Health Insurance Nondiscrimination Died

Creates the Healthy California Board, which is responsible for the establishment of the Healthy California program to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Consistent with the Unruh Civil Rights Act, the Board must promote nondiscrimination with respect to members and health care providers on the basis of genetic information and other characteristics. Died.

Georgia Employment Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Died

This bill creates guidelines such as consent requirements for the creation and storage of biometric information, which is defined to include DNA samples. The bill also prohibits life insurers from requiring genetic information to determine an applicants eligibility or rates to be charged for life insurance; however, any pre-existing genetic information must be supplied to the insurance company upon application. The bill forbids employers or employment agencies from using information derived from genetic testing for identification purposes or as a condition of employment. The bill provides remedies for individuals whose genetic information is inappropriately used. Measure failed.

Michigan Privacy Died

Amends the state genetic privacy law. Changes in introduced version of bill only involve unsubstantial changes in wording of text. Died.

Louisiana Employment Nondiscrimination Died

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes in present law, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell trait, and genetic information. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information on any student without the express written consent of the student�s parent or legal guardian. Biometric information is defined to include a DNA sequence and newborn screening 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. Died.

New Jersey Privacy Died

Prohibits a teaching staff member employed by a board of education from inputting the individually identifiable health information of a student or members of a student�s family, or conversations concerning such information, into a third party software application managed by an entity that engages in partisan political activity. The bill defines individually identifiable health information as any information, including genetic or vaccination information, relating to the past, present, or future physical or mental health or condition of an individual that either identifies the individual or could reasonably be used to identify the individual. Died.

New York Privacy Died

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

California Privacy Died

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it�s privacy policies, at the point of sale of the product, and on product packaging. The notice must contain information about the company's privacy policy. Died.

Maryland Other Topics Died

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information. Died.

Hawaii Health Insurance Coverage Died

Requires health insurers, mutual benefit societies, and health maintenance organizations to provide coverage for genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

Minnesota Privacy, Research Died

This bill creates personal property rights human biological specimens, defined as tissues, organs and body parts from which DNA may be isolated and requires written informed consent for the use of biological specimens in medical or genetic research. Consent forms must provide at least three options, including consent for a specific research project, consent for future research projects that are yet undefined, or consent for future research projects that are yet undefined, contingent on the research entity returning to seek specific written informed consent if the project is or could be considered controversial. The bill allows limited use of biological specimens for the calibration of laboratory equipment. Measure failed.

Maine Privacy Died

Establishes consumer rights with respect to personal information collected by a business. Personal information includes biometric information. Biometric information is defined to include deoxyribonucleic acid. Died Between Houses, Jun 2, 2021.

Montana Health Insurance Nondiscrimination Died

A health insurance issuer offering individual health_insurance_coverage in this state may not establish rules for eligibility or adjust premiums for any individual or individual's dependent to enroll in individual health_insurance_coverage based on genetic information. Individual health insurance issuers also may not impose any preexisting condition exclusion on the basis of genetic information or request or require an individual or a family member of an individual to undergo a genetic test. Died in Standing Committee.

New York Health Insurance Coverage Died

This bill requires health insurers to cover genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

Tennessee Other Topics Died

Creates a genetic advisory committee. Substituted by 2019 SB 127, which became Pub. Ch. 43 April 3, 2019.

West Virginia Health Insurance Coverage Died

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

Alaska Privacy Died

Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session.

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.

Massachusetts Health Insurance Coverage Died

Measure to enhance high quality, affordable health care. The bill includes a provision requiring coverage for genetically targeted drugs for Duchenne muscular dystrophy, if offered to active or retired employees of the commonwealth insured under the group insurance commission. Died.

Iowa Health Insurance Nondiscrimination, Privacy, Research Died

This bill prohibits health insurers from discriminating based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. Measure failed.

Mississippi Employment Nondiscrimination Died

Makes it unlawful for any employer or insurer to use the results of DNA testing against a patient or against the patient's consanguineous family members for any discriminatory purpose. Any employer who violates this section shall, upon conviction, be fined up to $5,000.00 or imprisoned for not more than one year, or both. Died in Committee on February 4, 2014.

Maryland Health Insurance Nondiscrimination Died

Establishing Healthy Maryland as a public corporation and a unit of State government to provide comprehensive universal health coverage for every Maryland resident. The Health Maryland Board must develop rules to promote nondiscrimination with respect to genetic information among members and providers. Died.

New Jersey Privacy Died

Makes confidential any part of a 9-1-1 audio recording or transcript that discloses a person's health status, medical conditions, health care services or treatments, medical history, genetic information, or current health insurance plan information by excluding it from the definition of a government record. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination, Privacy Died

Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

Ohio Privacy Died

Requires a health care provider to obtain an individual's informed consent prior to testing for the presence or absence of a communicable life-threatening disease or infection or immune response to disease or infection that is the subject of an epidemic or pandemic. The results of an individual's test, including any partial or complete biometric record of an individual's DNA sequence is the property of the individual and may only be transmitted to the individual tested. 5/27/20 Referred to Committee on State and Local Government. Died.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. 1/13/2021 Read 1st time & referred to Committee on Economic Development, Housing and General Affairs. Carries over to 2022.

Connecticut Health Insurance Coverage Died

Adds tomosynthesis to health_insurance_coverage requirements 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.

Massachusetts Health Insurance Coverage Died

This bill requires 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 to provide benefits on a nondiscrminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Accompanied a new draft 2010 H. 4935, which was enacted.

Idaho Privacy Died

Unless explicitly mandated by federal statute, a state agency, district or education institution must obtain written consent from parents or eligible students before collecting biometric records, defined to include a DNA sequence. Died.

Minnesota Other Topics Died

Establishes a pharmacogenetics task force. Died.

Maryland Employment Nondiscrimination Died

This bill amends the employment discrimination law to state that an unlawful employment practice is established, including discrimination based on genetic information, when the complainant demonstrates that genetic information was a motivating factor for any employment practice even though other factors motivated the practice. Measure failed.

Nevada Health Insurance Coverage Died

Requires the State Plan for Medicaid to pay the nonfederal share of expenditures incurred to perform genetic testing to detect birth defects in the fetus of a pregnant woman who is 40 years of age or older. 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