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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
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.

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 insurers and employers. 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.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

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.

Texas Privacy Died

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.

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.

West Virginia Health Insurance Coverage Died

Requires health_insurance_coverage of a comprehensive ultrasound screening if a mammogram demonstrates heterogeneous or dense breast tissue 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 nurse. To House Banking and Insurance 02/23/21. Died.

Massachusetts Privacy Died

Amends data security protections to include biometric information, which is defined to include genetic information. 2/13/2020 In senate. Accompanied a study order. Died.

Mississippi Privacy Died

Enacts the Consumer privacy Act. Provides certain rights to consumers such as the right to know the categories and specific pieces of personal information collected and the right to require a business to delete personal information. Personal information is defined to include biometric information such as DNA sequences. 02/05 (H) Died In Committee

Michigan Privacy Died

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

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.

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.

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.

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.

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.

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.

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.

Washington Other Topics Died

Restricts genome editing of human embryos. Died.

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.

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.

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.

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.

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.

Displaying 276 - 300 of 1160

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