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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 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.

North Dakota Privacy Died

Enacts a new chapter of the statutes relating to genetic privacy. A person may not collect a DNA sample from an individual, perform a DNA analysis on a sample, retain a DNA sample or the results of a DNA analysis, or disclose the results of a DNA analysis unless the person has first obtained the informed and written consent of the individual or of the individual's legal guardian or authorized representative, for the collection, analysis, retention, or disclosure. A DNA sample and the results of a DNA analysis performed on the sample are the exclusive property of the individual sampled or analyzed. The bill provides certain exemptions. Died.

Vermont Privacy Died

Proposes to identify a DNA sample and the results of a DNA analysis performed on the sample as the exclusive property of the person sampled or analyzed and to provide criminal and civil penalties for unlawful DNA collection, analysis, retention, or disclosure. Died.

Wisconsin Privacy Died

Establishes requirements on controllers that process consumers' personal data, including genetic data. 4/1/2020 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.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/22/2021 Voted Do Pass Senate Insurance and Banking Committee. Died.

New Mexico Privacy Died

Prohibits the disclosure of sensitive personal information by a state agency employee acquired by virtue of the employee's position with a state agency to anyone outside the state agency except under specified circumstances. Died.

New York Research Died

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died.

Tennessee Health Insurance Nondiscrimination Died

Prior to amendment, this bill exempt insurance pools created by an association of private, not-for-profit educational institutions that has been in existence for at least 25 years from the provisions governing genetic information nondiscrimination. This language was removed from the final version of the bill. The companion bill substituted with SB 343 signed by the Governor May 15, 2007.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. 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.

West Virginia Health Insurance Coverage Died

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. 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.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Mississippi Health Insurance Nondiscrimination Died

Prohibits health plans from denying coverage for a preexisting condition unless certain conditions are met. Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/30/2018 Died in Committee.

New Jersey Privacy Died

Establishes personal property rights to DNA samples and genetic information resulting from DNA analysis. Requires consent for use of samples and information from person sampled or analyzed. Died.

New York Privacy Died

Requires written notification to parents of infant's whose DNA or blood spots are retained. Died.

Oklahoma Other Topics Died

Prohibits discrimination based on genetic information in housing and the full and equal enjoyment of the goods, services, facilities, privileges, advantages, and accommodations of a place of public accommodation. Died.

Virginia Employment Nondiscrimination Died

This bill amends the state employment genetic nondiscrimination law by adding the Commonwealth or any of its agencies, institutions, or political subdivisions, or any public body to the list of entities covered under the law. Measure failed.

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 Privacy Died

Requires certain private entities in possession of biometric identifiers or biometric information to develop a written policy, made available to the public, establishing a certain retention schedule and guidelines for permanently destroying biometric identifiers and biometric information. Biometric identifier is defined to includes a genetic print. The bill defines confidential and sensitive to include a genetic marker and genetic testing information. In the Senate - Hearing 1/27 at 1:00 p.m. Died.

Minnesota Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

Nebraska Privacy Died

This bill amends section 71-551 of the statutes on genetic testing. Proposed changes address the types of genetic tests covered under law and and consent requirements. Measure failed.

New York Health Insurance Nondiscrimination Died

This bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Health Insurance Coverage Died

Provides insurance coverage for colonoscopies for individuals 45 or older based on risk factors, including genetic history. Died.

Texas Privacy Died

This bill establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for magnetic resonance imaging for certain persons for the detection of breast cancer, including women who have tested positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations or one or more first degree relatives test positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations. 3/28/2016 Accompanied a study order, see H4111.

Minnesota Privacy Died

The controller of a legal entity that conducts business in the state may not process sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of the processing of personal data concerning a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Sensitive data is defined to include genetic or biometric data for the purpose of uniquely identifying a person. The law does not apply to various types of information and entities such as protected health information under HIPAA and identifiable private information according to federal policy for the protection of human subjects. Died.

New Hampshire Privacy Died

Establishes and individual's property right to his or her genetic information and DNA sample, except as expressly otherwise provided in statute. Requires consent to acquire, retain, or disclose a person's genetic information or DNA sample. 5/2/2018 Refer to Interim Study, MA, VV.

New York Health Insurance Nondiscrimination Died

This bill prohibits any group or blanket health insurance policy from excluding coverage for any group member based on a predisposing genetic characteristic, and prohibits any hospital service corporation, health service corporation or medical expense indemnity corporation contract from excluding coverage for any group member based on predisposing genetic characteristics. Measure failed.

North Carolina Employment Nondiscrimination, Other Topics Died

Creates the Equal Employment and Equal Access to Public Accommodations Act. Declares that it is the public policy of the State to protect and safeguard the right and opportunity to all individuals to seek, obtain and hold employment without discrimination or abridgment and to enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination because of race, sex, national origin, citizenship, religion, age, veteran status, genetic information, pregnancy, handicap, or disability. Declares that it is the policy of the State Board of Community Colleges, local boards of trustees of the State of North Carolina, and the Board of Governors of the University of North Carolina not to discriminate among students. Died.

Texas Other Lines of Insurance Nondiscrimination Died

Relates to a prohibition on the use of genetic information gathered from direct-to-consumer genetic tests by a long-term care benefit plan issuer or a life insurance company. 5/17/2021 Received from the House. Died.

Wisconsin Employment Nondiscrimination Died

Authorizes the circuit court to order a person who engages in discrimination in employment, unfair honesty testing, or unfair genetic testing to pay compensatory and punitive damage. 4/13/2016 Failed to pass pursuant to Senate Joint Resolution 1.

Arizona Other Topics Died

Amends statute pertaining to laboratory testing without a healthcare provider's order. Defines laboratory testing to include pharmacogenetic testing. 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.

Michigan Health Insurance Nondiscrimination Died

This bill allows a health insurer to request a genetic test as additional information for prior authorization. (See version passed by the Senate). Measure failed.

Missouri Privacy Died

Protects the privacy of student data, which encompasses biometric records. Biometric records is defined to include DNA. Died.

New Jersey Employment Nondiscrimination Died

Creates the State Anti-Harassment and Workplace Discrimination Act. Declares that it is an unlawful employment practice and unlawful discrimination, for any person, whether an employee or applicant for employment, or intern or volunteer, in any State agency or Gubernatorial Transition Office, or person doing business with the State to discriminate against or harass an employee or applicant for employment, or intern or volunteer, based upon certain protected categories, genetic information. 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