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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
Washington Privacy Died

Protects sensitive data of consumers, including genetic data. 1/13/2020 By resolution, reintroduced and retained in present status. 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.

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.

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.

Massachusetts Health Insurance Coverage, Other Topics Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. 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.

New Hampshire Privacy Died

Prohibits private entities from requiring an individual to disclose or provide biometric data, including DNA, as a condition of doing business with, engaging in any business activity or relationship with, or obtaining services from that private entity, unless the good, service, or activity provided by the private entity cannot be provided without the collection of biometric information from an individual. A private entity may not collect, use, or retain the biometric information of an individual without the individual's consent and shall not condition access to its good, service, or activity on the provision of biometric data. Died.

New York Health Insurance Coverage Died

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. Died.

North Carolina Health Insurance Nondiscrimination Died

Prohibits an association health plan or sponsoring association from conditioning eligibility for coverage, including continuing eligibility for coverage, on health-status factors such as genetic information. Died.

Utah Privacy Died

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. Died.

Wisconsin Health Insurance Nondiscrimination Died

In selecting patients with whom to enter into a direct primary care agreement, a health care provider may not discriminate on the basis of genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

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.

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.

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.

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 - First Reading Finance. 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.

Montana Health Insurance Nondiscrimination Died

Health insurance issuers offering individual health_insurance_coverage may not establish rules for eligibility, including continued eligibility, of any individual based on a health status-related factor, including genetic information, of the individual or a dependent of the individual. Died.

New York Health Insurance Nondiscrimination Died

This bill prohibits group or blanket policies that cover 51 or more employees for hospital, medical, major medical, or similar type comprehensive coverage from excluding members or dependents or establishing rates based on predisposing genetic characteristics. The bill also prohibits health insurers from requiring or using tests for or information about predisposing genetic characteristics for underwriting. The same restrictions are imposed upon hospital service corporations, health services corporation and medical expense indemnity corporations covering 51 or more employees. Measure failed.

New York Privacy Died

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information. Personal information includes biometric information such as DNA. Died.

Tennessee Privacy Died

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

West Virginia Privacy Died

The Division of Motor Vehicles or other state agency or department charged with motor vehicle registration or operation, the issuance or renewal of driver licenses or the issuance or renewal of any identification cards, must modify applications to include an exemption for a biometric and social security number religious exemption. Biometric data is defined to include DNA and RNA. Died.

Arkansas Privacy Died

Enacts the Parents' Bill of Rights. A parent must consent in writing before a biometric scan of a minor child or a record of a minor child's blood or DNA is created, shared, or stored. April 2, 2015 Recommended for study in the Interim by Joint Interim Committee on JUDICIARY COMMITTEE- HOUSE

Florida Health Insurance Nondiscrimination Died

Creates Healthy Florida Program for purpose of comprehensive universal single-payer health care coverage. The Board of the program must establish requirements and standards to promote nondiscrimination, including based on genetic information. Died.

Kentucky Privacy Died

Requires certain information holders to encrypt personally identifiable data, which is defined to include a genetic print. Information holders must report a breach of personally identifiable information to consumers. Died.

Maryland Privacy Died

A business that owns or licenses computerized data that includes personal information such as genetic information of an individual must conduct a reasonable and prompt investigation upon the breach of the security of a system. April 3, 2019 Unfavorable Report by Finance.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality to from engaging in a discriminatory land use practice, including practices based on genetic information. Accompanied a study order, see H5081. Died.

Mississippi Privacy Died

Enacts the Parents Matter Act. Parental rights include the right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (S) Died In Committee.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New York Use of Residual Newborn Screening Specimens Died

Requires parental consent for newborn DNA storage. The bill states that no test, DNA, blood spot, or other genetic information may be retained with an infant's identifying information other than for the purpose of newborn screening without parental consent. Died.

Oklahoma Health Insurance Nondiscrimination, Research Died

A health carrier offering health benefit plans providing individual market health_insurance_coverage may not (1) impose a pre-existing condition exclusion on the basis of genetic information, (2) establish rules for the eligibility, including continued eligibility, of any individual to enroll for coverage based on genetic information, (3) adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or a family member of the individual, (4) request or require an individual or a family member of an individual to undergo a genetic test, or (5) request or require or purchase genetic information for underwriting purposes or to determine eligibility. A health carrier may request, but not require, that an individual or a family member of the individual undergo a genetic test if the request is made pursuant to research that complies with Part 46 of Title 45, Code of Federal Regulations or equivalent federal regulations and any applicable state or local law or regulations for the protection of human subjects in research and other criteria are met. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

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.

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.

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.

Connecticut Health Insurance Coverage Died

Requires individual health insurance policies to provide coverage for diagnostic and screening mammograms under certain circumstances. Positive genetic testing for the harmful variant of breast cancer gene one, breast cancer gene two or any other gene variant that materially increases the insured's risk for breast cancer fulfills the criteria for required coverage. Died.

Illinois Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures for treatment, payment, health care operations, health oversight activities, and public health activities; uses and disclosures of information to a health information exchange; business associates; and establishment and disclosure of limited data sets and de-identified information. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. 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 Health Insurance Coverage Died

Individual or group policies of accident and sickness insurance, except policies providing supplemental coverage to Medicare or to other government programs, delivered, issued or renewed by agreement within or without the commonwealth must provide coverage for breast cancer screening technology, including, but not limited to, Magnetic Resonance Imaging (MRI) for high risk women. Coverage must be provided not less than once annually to women 25 years and older. High risk women, include, but are not limited to women who test positive for BRCA 1 or 2 or who have one or more first degree relatives that have tested positive for BRCA 1 or 2. Reporting date extended to Thursday July 31, 2014, pending concurrence. Died.

Minnesota Other Topics Died

Establishes a pharmacogenetics task force. Died.

New Hampshire Privacy Died

This bill establishes procedures for protecting the privacy of student and teacher personally-identifiable data, including DNA. As of October 30, 2014, Interim Study Report: Recommended for Legislation in 2014 (Vote 15-0).

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of people with a family history of cancer when his or her physician determines that there is a significant risk of developing cancer. Measure failed.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

Texas Privacy Died

Limits the use of biometric identifiers by governmental bodies. Biometric identifiers are defined to include a DNA sample. Died.

Wisconsin Employment Nondiscrimination Died

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Measure failed.

California Employment Nondiscrimination Died

Prohibits discrimination in a digital marketplace or otherwise acting upon applications to participate with a digital marketplace as a marketplace contractor based on an individual's genetic characteristics. Died.

Georgia Health Insurance Nondiscrimination Died

This bill prohibits a health group cooperative from excluding a small employer based on a health status-related factor, including genetic information in relation to an employee or dependent of an employee. Measure failed.

Louisiana Health Insurance Coverage Died

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for a medically necessary drug on the basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Died.

Maryland Privacy Died

Amends the Personal Information Protection Act by adding activity tracking data to the scope of protected information. Activity tracking data is defined to include genetic information; genetic samples; genetic tests of an individual or family member; and requests for or receipt of a genetic test, genetic counseling or genetic education. Died.

Massachusetts Other Topics Died

Requires that certain state entities make a dedicated effort to encourage diversity and advance equity based on race, color, religious creed, national origin, sex, gender identity, sexual orientation, genetic information, ancestry, disability, and language in any recommendations, policies, programs and initiatives developed. 1/5/2021 In Senate. No further action taken. 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