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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
Wisconsin Health Insurance Nondiscrimination Died

Amends health insurance law pertaining to pre-existing conditions. Insurers may not treat genetic information as a pre-existing condition. Provision stating "without a diagnosis of a condition related to the information" is stricken. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

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.

Michigan Employment Nondiscrimination Died

Requires employers of 50 people or more to post a notice that it is illegal under federal law to pay employees different wages for the same work based on certain criteria, including genetic information. Died.

Missouri Privacy Died

Prohibits school district from collecting biometric information on any student without express written consent of the student�s parent or legal guardian. Biometric information includes a DNA sequence. 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.

New York Privacy Died

Establishes a personal information bill of rights. Declares the right of all New Yorkers to have their personal information, including DNA, protected. Died.

South Carolina Privacy Died

Sets forth requirements for the collection and use of consumer biometric information by businesses. Biometric information is defined to include an individual's DNA. Died.

Washington Employment Nondiscrimination Died

Concerns harassment and discrimination by legislators and legislative branch employees, including discrimination based on genetic status. Substitute bill, which did not include genetic discirmination provision, was enacted.

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.

Massachusetts Privacy Died

Requires the department of consumer affairs and business to adopt regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Personal information includes biometric indicators (or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry). 6/27/2018 Accompanied a study order, see H4648.

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.

California Other Topics Died

A certified peace officer must have their certificate suspended or revoked, and an applicant must have their application for a certificate denied, upon a determination that the peace officer or applicant meets certain conditions. Requires the development of a definition of �serious misconduct," which will serve as the criteria to be considered for suspension or revocation of a certificate. This definition must include certain examples of serious misconduct such as bias in the performance of a peace officer or custodial officer�s duties, including, but not limited to, verbal statements, writings, online posts, recordings, and gestures involving prejudice or discrimination against a person on the basis of genetic information. Carries over to 2022.

Hawaii Health Insurance Coverage Died

Requires accident and health or sickness insurers to provide coverage for genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill repeals an exemption for disability insurance under the state genetic nondiscrimination law and amends the definition of genetic information used in the health_insurance_nondiscrimination law. Measure failed.

Massachusetts Health Insurance Coverage Died

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

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not use genetic information to establish a pre-existing condition exclusion in the absence of a diagnosis of a condition related to the genetic information. 2/23/2016 (H) Died In Committee.

New Jersey Other Topics Died

Requires testing of infants for genetic mutations associated with the development of hereditary hemochromatosis. Died.

New York Health Insurance Coverage Died

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

Oklahoma Health Insurance Coverage Died

This bill requires individual and group health insurers that provide coverage on an expense-incurred basis to provide reimbursement not to exceed $115 for mammography screening any female under 35 with a genetic predisposition to breast cancer. Measure failed.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended. Died.

Alaska Privacy Died

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. Died.

Florida Neonatal sequencing Died

Children?s Medical Services Program; Deleting a requirement that the Department of Health consult with the Department of Education before prescribing certain newborn testing and screening requirement...

Iowa Use of Residual Newborn Screening Specimens Died

Requires the Center for Congenital and Inherited Disorders to adopt rules to prohibit the retention and ensure proper disposal of residual newborn screening specimens. The Center must incinerate any residual specimens being stored before the effective date of the bill. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

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.

Minnesota Health Insurance Nondiscrimination Died

This bill adds supplemental Medicare policies to health insurance plans covered under the state genetic_discrimination Act. HF 1853, which was approved by the Governor, was substituted for this bill.

Montana Other Lines of Insurance Nondiscrimination Died

Amends existing genetic information and insurance law by removing the exclusion of life, disability and long-term care insurance. Died.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on a insured, applicant or family member of insured or applicant. Measure failed.

New York Health Insurance Coverage Died

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

Tennessee Privacy Died

Prohibits a direct-to-consumer genetic testing business entity from sharing personally identifiable genetic test data or other personally identifiable information about a consumer with a third party without the express written consent of the consumer or a subpoena or court order. Died.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

Connecticut Other Topics Died

Requires a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of disease. Died.

Illinois Employment Nondiscrimination, Privacy Died

This bill amends the Genetic Information privacy Act and makes technical changes to the section of the law pertaining to employers. Measure failed.

Maryland Other Topics Died

Creates the task force on pharmacogenomics to examine questions related to pharmacogenomics, including how the State can adopt genomic testing as the standard of care for patients. Died.

Massachusetts Privacy Died

Prohibits a public agency or public official from: (1) acquiring, possessing, accessing, using, or assisting with the use of or provide resources for the development or use of any biometric surveillance system, or (2) entering into a contract with or making a request to any third party for the purpose of acquiring, possessing, accessing or using information derived from a biometric surveillance system, unless expressly authorized by law. Biometric data is defined to include deoxyribonucleic acid. Died.

Missouri Health Insurance Nondiscrimination Died

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

New Jersey Health Insurance Coverage Died

Requires a hospital service corporation that provides hospital or medical expense benefits to provide coverage for screening to determine whether genetic counseling related to the BRCA1 or BRCA2 genetic mutations is indicated; genetic counseling; and if indicated, BRCA testing. Died.

New York Other Topics Died

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling. Participation in the program is voluntary, and all information is confidential. Died.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Virginia Employment Nondiscrimination Died

Requires each legislative branch agency to adopt and implement the Commonwealth Workplace Harassment Policy established by the Department of Human Resource Management. Workplace harassment is defined to include harassment based on genetic information. Died.

California Use of Residual Newborn Screening Specimens Died

This bill amends existing law pertaining to pregnancy blood samples. Existing law provides for the use of samples for approved research projects and establishes confidentiality and privacy protections with regard to samples and related personal information. This bill renames the term "pregnancy" blood samples by referring to them as "newborn" blood samples. Measure failed.

Florida Privacy Died

Enacts the Parents Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child�s blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 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.

Massachusetts Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Measure failed.

Maryland Privacy 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 Privacy Died

Modifies existing law pertaining to the use of genetic information by government entities and enacts a new consumer protection law regarding the use of 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