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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 Summary Sort descending
North Carolina Employment Nondiscrimination Enacted

Sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information. Signed by the Governor August 21, 2013.

Maryland Privacy Died

Sets forth requirements for governmental units, including an executive, legislative or judicial agency, a department, a board, a commission, an authority, a public institution of higher education, or a unit or instrument of the state that collects or discloses personal information. Defines personal information to include an individual's genetic print. Died.

Maryland Privacy Died

Sets forth requirements for governmental units, including an executive, legislative or judicial agency, a department, a board, a commission, an authority, a public institution of higher education, or a unit or instrument of the state that collects or discloses personal information. Defines personal information to include an individual's genetic print. 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.

Wisconsin Privacy Died

Sets forth requirements regarding the deletion of consumer personal data, including genetic data, by controllers. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Florida Other Lines of Insurance Nondiscrimination, Privacy Died

Specifies criteria that must be met before a life insurer, long-term care insurer, or disability income insurer may use genetic information for underwriting purposes. Prohibits a life, long-term care, or disability income insurer from canceling coverage based solely on genetic information; requiring an applicant to take a genetic test as a condition of insurability; or obtaining, requesting, or otherwise requiring the complete genome sequence of an applicant�s DNA. Requires written consent for companies providing direct-to-consumer commercial genetic testing to share information about a consumer with a life insurer or health insurer. HB 1189 Substituted. Died.

Indiana Health Insurance Nondiscrimination Died

Specifies that a state employee health plan, a policy of accident and sickness insurance, and a health maintenance organization contract must provide for availability, renewability, premium rating, and coverage without regard to health status, including genetic information. Died.

Massachusetts Privacy Died

Specifies when authorization to disclose health care information is required. Health care is defined to include genetic information. As of June 6, 2014, accompanied by a study order (see H4147).

California Use of Residual Newborn Screening Specimens Died

States that a newborn sample may not be used for medical research if a parent or guardian of the newborn child objects to the testing program. The bill would require the department to provide information about the testing program, and to obtain a form signed by the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child�s blood sample for medical research. Died.

California Other Topics Enacted

States that certain peace officer or custodial officer personnel records and records maintained by a state or local agency are not confidential and are should be made available for public inspection. Such records 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 including, but not limited to, verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the based on various characteristics, including genetic information. 10/5/21 Approved by the Governor. Effective 1/1/2022.

California Other Topics Enacted

States that certain peace officer or custodial officer personnel records and records maintained by a state or local agency are not confidential and are should be made available for public inspection. Such records 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 including, but not limited to, verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the based on various characteristics, including genetic information. 9/30/2021 Approved by the Governor. Effective 1/1/2022.

Washington Health Insurance Coverage Died

Substitute bill version: Requires the drug utilization review board to consider the safety, efficacy, and cost-effectiveness of drugs and gene therapies in its recommendations to the director of the authority regarding coverage for medical assistance programs. Died.

California Other Lines of Insurance Nondiscrimination Statute

Tests for genetic characteristics may not be required to determine insurability for life and disability income insurance except for policies contingent on review or testing for other diseases and conditions and only with informed consent. Policies may only limit benefits otherwise payable if loss is caused or contributed to by the presence or absence of genetic characteristics if the insurer imposes limitations for other medical conditions that present an increased risk. A life or disability income insurer may not request a genetic test to determine eligibility for hospital, medical or surgical insurance coverage or coverage under a nonprofit hospital service or health care service plan. The statutes set forth civil and criminal penalties for violations.

Massachusetts Privacy Died

The bill amends statute sections pertaining to the department of consumer affairs and business regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Changes add biometric information, including genetic information, to the types of personal information protected under the law. Died.

Massachusetts Privacy Died

The bill amends statute sections pertaining to the department of consumer affairs and business regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Changes add biometric information, including genetic information, to the types of personal information protected under the law. Died.

Idaho Health Insurance Nondiscrimination Died

The bill amends the state genetic nondiscrimination law by prohibiting discrimination on the basis of genetic information or a genetic test in the issuance of coverage, or the fixing of rates, terms or conditions, for any policy or contract of hospital or medical insurance or any health benefit plan. Measure failed.

California Use of Residual Newborn Screening Specimens Enacted

The bill establish fees, which the department may collect from researchers who have been approved by the department and who seek to umbilical cord blood, pregnancy blood collected by the Genetic Disease Screening Program, and stored by the Birth Defects Monitoring Program, and newborn blood collected by the Genetic Disease Screening Program. Fees may not to exceed the costs of administering the program and collection and storage of the samples. Signed by the Governor September 30, 2008.

Hawaii Privacy, Research Died

The bill establishes requirements for the privacy of protected health information, including genetic information. Entities addressed in the bill include health care providers, health care data organizations, health plans, health oversight agencies, public health authorities, employers, insurers, health researchers, or edu�ational institutions. 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.

Arizona Privacy Enacted

The bill establishes the right of parents to consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as for newborn screening. Signed by the Governor May 10, 2010.

Minnesota Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

New York Health Insurance Coverage Died

The bill requires accident and health insurance policies to cover the cost of genetic testing for people with a family history of cancer when the attending physician determines the person has a significant risk of cancer. Died.

Hawaii Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Died

The bill requires contractors and prospective contractors with the state or counties to comply with the Genetic Information Nondiscrimination Act of 2008. Died.

Hawaii Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Died

The bill requires contractors and prospective contractors with the state or counties to comply with the Genetic Information Nondiscrimination Act of 2008. Died.

New York Health Insurance Coverage Died

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

Kentucky Privacy Enacted

The bills governs the use of personal information by state institutions. The definition of personal information includes a biometric or genetic print. Signed by the Governor on April 10, 2014.

Hawaii Health Insurance Nondiscrimination Died

The board of the Hawaii employer-union health benefits trust fund must require every health benefits plan established or contracted to include lower deductibles and co-payments for non-smokers of tobacco and other persons engaged in low risk health behaviors that are designed, in compliance with applicable federal and state laws, to encourage preventative health care, promote wellness, and discourage medically unnecessary use of health care services; provided that the board consults with medical professionals to determine what should be included as low risk health behaviors. Genetic factors and pre-existing medical conditions may not be considered as a behavior when determining what constitutes low risk behavior. 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.

Minnesota Privacy Died

The controller of a legal entity that conducts business in the state may not process sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of the processing of personal data concerning a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Sensitive data is defined to include genetic or biometric data for the purpose of uniquely identifying a person. The law does not apply to various types of information and entities such as protected health information under HIPAA and identifiable private information according to federal policy for the protection of human subjects. Died.

West Virginia Privacy Statute

The Department of Education must prohibit the collection of confidential student information, including genetic information. The Department may not transfer student or redacted data that is confidential except under specified circumstances.

Maine Privacy Died

The department of education, a school administrative unit or a state agency may not collect, store, transmit or process the certain information, including DNA, from a student without the written consent of a parent or guardian of a student or an eligible student unless otherwise required or authorized by statute or rule. Died.

Illinois Health Insurance Coverage Died

The Department of Healthcare and Family Services must authorize the provision of, and payment for, a baseline mammograms for women 35-39 and mammograms at certain intervals for women over 40. Women under 40 with risk factors such as positive genetic testing should receive mammograms as medical necessary. Measure failed.

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.

Minnesota Privacy, Research Statute

The health commissioner may collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection of human subjects in Code of Federal Regulations, title 45, part 46. Biological specimens is defined as tissue, fluids, excretions, or secretions that contain human DNA originating from an identifiable individual, either living or deceased.

Connecticut Use of Residual Newborn Screening Specimens Statute

The Health Commissioner must review and approve research proposals to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals.

Nebraska Use of Residual Newborn Screening Specimens Statute

The health department must adopt and promulgate rules and regulations relating to the use_of_residual_newborn_screening_specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department. The health department also must develop a pamphlet which explains that residual newborn blood specimens may be used for approved public health research.

New Hampshire Research Died

The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table.

Maine Privacy Statute

The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

New Hampshire Privacy Enacted

The introduced version of the bill sought to protect confidential and sensitive information such as genetic testing information. The bill has been amended to establish a committee to study the use and regulation of biometric information. Signed by the Governor on 5/15/2018. Effective 5/15/ 2018.

Maryland Research Statute

The law prohibits research using a human subject unless the person conducts the research in accordance with the federal regulations on the protection of human subjects.

Wyoming Privacy Statute

The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law.

Michigan Health Insurance Nondiscrimination, Privacy Statute

The law requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests.

Colorado Health Insurance Coverage Statute

The law requires breast cancer screening with mammography annually for persons with a predisposition to breast cancer.

Maryland Privacy Statute

The law requires businesses to establish certain protections when using personal information. Personal information is defined to include an individual's genetic print.

Minnesota Health Insurance Nondiscrimination, Privacy Statute

The law requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act.

New York Research Statute

The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

North Carolina Employment Nondiscrimination Statute

The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information.

Oklahoma Other Topics Died

The Office of Management and Enterprise Services must contract with a vendor to conduct a pilot project to determine incentives to both health care providers and patients for each care encounter in which the provider and patient incorporate genetic testing for ability to metabolize prescription drugs, drug testing of persons prescribed narcotics and other proven medical interventions made available and recorded through the program in the rendering and utilization of health care. 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.

Maryland Health Insurance Coverage Enacted

The provision in the original version of the bill pertaining to the use of genetic information by carriers was amended. The enacted legislation establishes a workgroup on maintaining the protections established by the Affordable Care Act. May 13, 2019 Approved by the Governor - Chapter 418. Effective June 1, 2019.

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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