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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 Jersey Privacy Died

Expands the state law on discrimination by prohibiting any entity that operates a health program or activity from: 1. Excluding participation in, deny the benefits of, or otherwise discriminate under any health program or activity on the basis of an individual�s genetic information or 2. Aiding or perpetuating discrimination against any person by providing significant assistance to any entity or person that discriminates on the basis of genetic information. 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. Provisions include that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

Oklahoma Other Topics Died

Requires certain residents of long-term care facilities to have a pharmacogenomics profile conducted. The profile must include the results of at least eighteen genes tested and be accompanied by treatment guidance for each disease state-tested. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in basic health insurance plans in the absence of a diagnosis of the condition related to such information. Measure failed.

California Privacy Died

Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died.

Georgia Privacy Died

Except as required by the federal Individuals with Disabilities Education Act, specified information, including DNA, may not be collected, entered into any student data base, or maintained as education records by a state agency, local board of education, or school. Died.

Maine Privacy Died

Prohibits the collection, entry into an education database or maintenance of DNA by as education records by the department of education or school administrative unit. Died.

Maryland Other Topics Died

Prohibits a hospital or related institution from discriminating in admitting or providing care for an individual based on various factors, including genetic information. Died.

Maryland Privacy Died

Amends statute requiring a business that maintains personal information of an individual residing in the State to implement and maintain certain security procedures and practices. The bill adds the following to the definition of personal information: genetic information with respect to an individual, including the genetic sample of an individual; the genetic test of an individual; the genetic test of an individual's family member; the manifestation of a disease or disorder in a family member of an individual; any request for and receipt of genetic counseling, or genetic education; and any information derived from genetic information with respect to an individual. In the Senate - Hearing 2/10 at 1:00 p.m. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

The original version of this bill amended the newborn screening law pertaining to storage of blood samples. All language was subsequently deleted pertaining to the newborn screening program.

Montana Other Topics Died

Requires lobbyists to complete harassment prevention training. Harassment is defined to include unwelcome verbal or physical conduct that denigrates or shows hostility or aversion toward an individual on the basis of genetic information. Died.

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of 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 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.

Texas Privacy Died

This bill gives an individual property rights to his or her DNA sample. A person may not collect a DNA sample, perform a genetic test or retain a DNA sample, with few exceptions such as for law enforcement purposes. Measure failed.

West Virginia Privacy Died

Establishes a parental bill of rights. Requirements include parental consent in writing before any record of a minor child's blood or DNA is made, shared, or stored, unless such blood or DNA is otherwise required by law or court order. Died.

Alabama Privacy Died

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

Delaware Privacy Died

Restricts the use of a child's personally identifiable information, including DNA and other genetic material, by the operator of an internet service. Substitute bill passed by House and Senate, but substitute bill does not include language regarding DNA and genetic information. Substituted bill was signed by the Governor.

Illinois Health Insurance Coverage Died

Amends the Medical Patient Rights Act. Provides that all persons have a right to request an annual breast cancer screening mammogram under the age of 40 if such person has a family history of breast cancer or genetic testing has confirmed likelihood that such person has otherwise tested positive for BRCA1 or BRCA2 mutations. Died.

Maryland Other Lines of Insurance Nondiscrimination Died

For a stop-loss insurance policy or contract issues to a small employer, a medical stop-loss insurer may not increase cost-sharing or decrease coverage for a specific individual within the plan or exclude any employee or dependent base on an actual or expected health-status related factor, including genetic information. Died.

Massachusetts Privacy Died

Establish protections for the privacy of personal information pertaining to consumers, including biometric information such as DNA. 2/13/2020 In Senate. Accompanied a study order see S2534. Died.

Michigan Health Insurance Nondiscrimination, Research Died

This bill applies to insurers that provide Medicare supplement policies or certificates only. Denying or conditioning the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information is prohibited. These insurers of these policies or certificates may not (1) discriminate with respect to pricing on the basis of genetic information, (2) request or require an individual or family member to undergo a genetic test (with an exception regarding requesting a test), or (3) use the manifestation of disease in an individual as genetic information about another group members and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met. 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 Privacy Died

Requires certain businesses to notify data subjects of collection of personally identifiable information and establishes certain security standards. Personally identifiable information is defined to include biometric information such as DNA. Died.

New York Privacy Died

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. Died.

Rhode Island Privacy Died

Creates the Consumer privacy Protection Act. Establishes requirements for the collection, use, sale, retention and disclosure of personal information by businesses. Personal information is defined to include biometric information such as DNA. Died.

Displaying 26 - 50 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