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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 ascending Summary
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.

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.

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.

Iowa Health Insurance Nondiscrimination Died

Iowa residents are eligible and entitled to enroll as a member in and receive benefits for health care services covered by the healthy Iowa program. A participating health care provider or participating care coordinator may not refuse to provide health care services to a member on the basis of genetic information. 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. Died.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New York Research Died

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

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.

Oregon Health Insurance Coverage Died

A health benefit plan offered in Oregon must provide coverage for BRCA testing, if indicated. Died.

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.

Virginia Privacy Died

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. 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.

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.

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.

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.

Texas Privacy Died

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

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.

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 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.

Missouri Employment Nondiscrimination Died

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

Michigan Employment Nondiscrimination Died

Requires employers of 50 or more individuals to post a notice that wage discrimination based on genetic information is prohibited under federal law. Died.

Missouri Privacy Died

Prohibits a person or entity from disclosing, obtaining, retaining, or using any biometric data about an individual, including DNA, with whom the person or entity is engaged in trade or commerce for any purpose other than that which the individual reasonably expects. Died.

New Mexico Health Insurance Nondiscrimination Died

Prohibits pre-existing condition exclusions in qualified health plans in the New Mexico Health Insurance Exchange Act. Genetic information is not included as a preexisting condition for the purposes of limiting or excluding benefits in the absence of a diagnosis of the condition related to the genetic information. (Provision related to genetic information is in Committee Substitute version) Died.

New York Employment Nondiscrimination Died

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

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.

South Dakota Health Insurance Nondiscrimination Died

This bill repeals the authority of the director of the Division of Insurance to promulgate rules governing use of genetic information and enacts certain provisions regarding the use of genetic information. Measure failed.

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.

Washington Health Insurance Nondiscrimination Died

Making state law consistent with selected federal consumer protections in the patient protection and affordable care act. Prohibits a health carrier or health plan from establishing rules for eligibility based on health-status related factors such as genetic information. Died.

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.

Massachusetts Health Insurance Coverage Died

Requires coverage for the diagnosis of Alfi's Syndrome, including genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the genetic nondiscrimination in health insurance act. No health benefit plan may cancel, deny or refuse to renew benefits or coverage based on genetic information. This bill also places restrictions on health benefit plan's ability to request or require disclosure of genetic information. Measure failed.

New Hampshire Privacy Died

Grants consumers the right to request that a business disclose the type of personal information it collects, the purpose for which it is collected, and the categories of third parties with which it is shared. Authorizes consumers to opt out of the sale of their personal information. Personal information is defined to include biometric information such as an individual's DNA. 10/29/2020 Interim Study Report: Recommended for Future Legislation (Vote 10-5). Died.

New York Use of Residual Newborn Screening Specimens Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. 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.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. 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.

Utah Privacy Died

Requires a government agency to make an annual report to the state auditor regarding: the government agency's collection, use, and disclosure of personal identifying information; any misuse or improper disclosure of personal identifying information; and measures taken to notify individuals of any misuse or improper disclosure. Personal identifying information includes DNA. 3/5/2021 House filed.

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.

Wisconsin Employment Nondiscrimination Died

Allows the Department of Workforce Development or an individual who is alleged or was found to have been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court in addition to or in lieu of filing an administrative complaint, with some exceptions. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

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.

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 House - Withdrawn by Sponsor. Died.

Minnesota Privacy Died

This bill amends the definition of genetic test in the statutes regarding government data practices. Measure failed.

Montana Other Lines of Insurance Nondiscrimination Died

Creates the Montana family and medical leave insurance fund. Applicants for coverage must provide eligibility documentation. The department may not require documentation that exceeds the right to privacy allowed under HIPAA, the ADA and GINA. 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. Measure failed.

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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