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

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by employers and insurers. Measure failed.

New York Employment Nondiscrimination Died

Prohibits hiring parties from subjecting a model to harassment based on various factors, including predisposing genetic characteristics. Died.

Texas Privacy Died

Creates a personal property right in a sample of genetic material and in the genetic information obtained as a result of a genetic test performed on an individual's sample. Died.

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.

Arizona Health Insurance Nondiscrimination Died

This bill prohibits health care service organizations from imposing pre-existing condition limitations or exclusions. Genetic conditions in the absence of a diagnosis related to the condition are not considered pre-existing conditions and may not result in a pre-existing condition limitation or exclusion. Measure failed.

Florida Other Topics Died

The bill establishes the Florida Priority Care Project. The project aims to place a higher public priority on targeting the needs of adults who have a serious mental illness and who have a history that indicates a high probability that they could pose a threat to public safety. Requirements for the project include the use of genetic testing to help establish the correct medication regimes to be used to manage and treat a client's symptoms. Died.

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

This bill establishes a genetics advisory council to study various topics, including 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.

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

Prohibits a state agency from disseminating to any person any personal data of an individual without the individual �s written consent. A state agency must retain the written consent of an individual obtained per certain requirements. A state agency may not require an individual to consent to dissemination of the individual�s personal data in exchange for access to the services provided by the agency or to the agency�s Internet website. 3/3/2021 Referred to Finance. Died.

Wisconsin Health Insurance Nondiscrimination Died

Amends health insurance law pertaining to pre-existing conditions. Insurers may not treat genetic information as a pre-existing condition. Provision stating "without a diagnosis of a condition related to the information" is stricken. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

California Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill states that all biological data derived from post-CLIA bioinformatics services shall be considered to contain genetic characteristics, as defined in section 1374.7 of the Health and Safety Code and section 10146 of the Insurance Code and is subject to the prohibitions in those sections of the statutes. Measure failed.

Florida 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. 3/14/2020 Died in Judiciary.

Kentucky Other Topics Died

Requires a health facility that provides perinatal care inform each patient, upon admission regarding the patient's right to to be free of discrimination on the basis of various factors, including 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. Died.

Michigan Privacy Died

This bill requires the Department of Community Health to develop a model written, informed consent form for genetic testing. Health care professionals must have test subjects complete the form prior to ordering genetic testing. Died.

Missouri Privacy Died

Requires state education agencies to obtain parental consent to collect biometric records from parents, K-12 students or through data sharing agreements with any other entity. Biometric records are defined to include DNA sequences. Died.

New Jersey Employment Nondiscrimination, Other Topics Died

Requires adoption of and training on anti-discrimination and anti-harassment policy by certain campaign committees. Protected category includes genetic information. Died.

New York Other Topics Died

Prohibits the distribution of consumers' DNA profiles submitted to direct-to-consumer genetic testing companies. Requires companies to provide a copy of their privacy policy to any consumer that submits a DNA sample and provides for civil penalties for violations of these provisions. Died.

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.

Washington Privacy Died

Protects consumer data. Original version of bill included genetic data in the definition of sensitive information, but it was removed from the substitute bill version. 1/13/2020 By resolution, reintroduced and retained in present status. Rules Committee relieved of further consideration. Died.

Connecticut Health Insurance Coverage Died

The Commissioner of Social Services must provide Medicaid coverage to the extent permissible under federal law for pharmacogenomics tests determined to be medically necessary. The commissioner may not require prior authorization for medically necessary pharmacogenomics tests for persons being treated for (1) behavioral disorders, (2) psychiatry disorders, (3) cardiovascular disorders, and (4) chronic pain. Died.

Illinois Privacy Died

This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to cancer drugs.

Maryland Privacy Died

Requires certain businesses, when destroying a customers records that contain personal or private information of the customer, to take specific steps to protect against unauthorized access to or use of the information. Personal information is defined to include an individual's genetic print. Died.

Massachusetts Privacy Died

Adds biometric indicators to the state data security protection law. Biometric indicator is defined as any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry. Died.

Minnesota Privacy Died

Establishes the Minnesota Consumer Data privacy Act. Gives various rights to consumers regarding personal data. Personal data includes the processing of genetic or biometric data for the purpose of uniquely identifying a person. Places obligations on businesses regarding consumer data. Died.

New Hampshire Privacy Died

Adds biometric information to the Consumer Protection Act. Died.

Massachusetts Other Topics Died

Prohibits a local or state administrative, legislative or regulatory body or instrumentality to engage in a discriminatory land use practice, including discrimination based on genetic information. Died.

Mississippi Employment Nondiscrimination Died

Creates a small business health insurance pool. WIth regard to the pool, genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Died.

New Jersey Employment Nondiscrimination Died

A person may not refuse to refer a job seeker for employment or to discriminate against a job seeker in compensation or in terms, conditions or privileges of employment to which the job seeker is referred because of certain characteristics, including genetic information. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers, if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

Ohio Health Insurance Nondiscrimination Died

This bill creates the Ohio Health Benefit Exchange. The exchange must meet the minimum requirements of the Patient Protection and Affordable Care Act of 2010. Died.

Vermont Other Topics, Privacy Died

Protects consumer privacy by requiring that a business that collects genetic data from a Vermont consumer to provide ancestry or similar information protects the data and keeps it confidential. Carries over to 2022.

California Privacy Died

Amends statute pertaining to security requirements for business that own, license, or maintain personal information about a California resident. This bill would add genetic information to the definition of personal information under the law. Died.

Hawaii Privacy, Research Died

This bill adds a new chapter to the Hawaii statutes on the privacy of health care information. The bill provides for the protection of "protected health information," including genetic information. The bill allows a health care provider, health plan, public health authority, employer, insurer or educational institution to disclose protected health information to health researchers if certain requirements are met, including review of the research by an IRB. Measure failed.

Maine Health Insurance Nondiscrimination Died

In amended version, prohibits pre-existing condition exclusions in individual health plans but removes text referring to genetic information. Allows restricted enrollment in individual health plans during open enrollment periods and special enrollment periods in a manner consistent with federal law. Died.

Maryland Privacy Died

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information, including biometric information. Biometric information is defined as 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 Health Insurance Nondiscrimination, Other Topics Died

Declares that it is the policy of the state to provide affordable health care to all regardless of various factors, including genetic information. Prohibits discrimination based on genetic information by a hospital; a person licensed or otherwise regulated by the Maryland Department of Health; and a person, including a health maintenance organization, that provides health benefits and has a certificate of authority from issued by the Maryland Department of Insurance. Died.

Minnesota Privacy Died

This bill amends the definition of genetic information and creates a new section of the state genetic privacy law to separate the provisions that apply to government entities versus any person. The requirements imposed on government entities and any person with respect to written informed consent and appropriate use of genetic information are identical. Measure failed.

Montana Health Insurance Coverage Died

Each group or individual medical expense, cancer, and blanket disability policy, certificate of insurance, and membership contract must provide minimum mammography examination coverage. The definition of minimum mammography examination is amended to include: a) a mammogram each year for a woman who is under 35 years of age if: (i) the woman has two or more first-degree family members diagnosed with breast cancer or ovarian cancer; (ii) genetic tests indicate the woman is at higher risk for breast cancer; or (iii) the woman's physician recommends the test. Died in Standing Committee on April 24, 2013.

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 a insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security the information. Personal information is defined to include biometric information such as DNA. Died.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Washington 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.

Alabama Privacy Died

Prohibits state agencies, district boards of education, or pre K-12 educational institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits information about the student or the student's family concerning biometric records, which is defined to include DNA sequences. Died.

Delaware Privacy Died

Requires the Department of Education to promulgate rules and regulations relating to the privacy and protection of student data, including DNA or other genetic material. Senate Substitute Version passed in House and Senate -- DNA or other genetic information is replaced by biometric information. The term biometric information is not defined. Substituted bill was signed by the Governor.

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 Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing, if certain conditions are met. Died.

Florida Health Insurance Nondiscrimination Died

Creates the Healthy Florida program to be administered by the Healthy Florida Board. Every resident of Florida is eligible and entitled to enroll under the Healthy Florida program. The program may not discriminate based on genetic information. 3/10/2018 Died in Health Innovation Subcommittee.

Iowa Privacy Died

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

Maryland Other Topics Died

Amends the state law pertaining to direct and indirect advertisement of or solicitation of business for medical laboratory 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