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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
Kansas Health Insurance Nondiscrimination Enacted

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved March 22, 2010.

New York Research Enacted

Amends the public health law, in relation to authorizing human research in compliance with federal law. 9/13/2019 Signed by the Governor.

California Health Insurance Nondiscrimination Enacted

A stop-loss carrier must offer coverage to all employees and dependents of employees of a small employer to which it issues a stop-loss insurance policy and may not exclude any employee or dependent on the basis of an actual or expected health status-related factor, including genetic information. Approved by the Governor October 1, 2013.

Louisiana Other Lines of Insurance Nondiscrimination Enacted

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. 6/11/21 Signed by the Governor. Becomes Act No. 242. Effective August 1, 2021.

North Dakota Use of Residual Newborn Screening Specimens Enacted

This bill amends the statute that allows the health council to authorize the use of newborn metabolic screening tests for legitimate research purposes by broadening the term "newborn metabolic screening tests" to include "newborn metabolic and genetic disease screening tests." Signed by the Governor April 26, 2011.

Delaware Privacy Enacted

Establishes protections for personal information, including a deoxyribonucleic profiles, owned, maintained, or licensed by businesses in the state. Businesses must implement and maintain reasonable procedures and practices to prevent the unauthorized access to or acquisition, use, modification, disclosure, or destruction of personal information collected or maintained in the regular course of business. 8/17/2017 Signed by the Governor. Effective 4/14/2018.

Minnesota Other Topics Enacted

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of section 13.386 of the statutes. Signed by the Governor on May 18, 2013.

Washington Privacy Enacted

Modifies the state privacy law pertaining to biometric information by adding DNA to the definition of biometric identifiers. Provides an exception for law enforcement agencies. 6/27/2017 Signed by the Governor. Effective 7/23/2017.

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.

Maryland Privacy Enacted

Amends the Maryland Personal Information Protection Act. Requires a business to inform an employee or a former employee in the event of a breach of a security system that contains personal information, including a genetic print. A business subject to HIPAA is considered to be in compliance with the law. 5/4/2017 Approved by the Governor. Chapter 518. Effective January 1, 2018.

Oregon Health Insurance Nondiscrimination Enacted

Aligns Oregon health insurance law with changes in federal law and renumbers sections of Oregon law pertaining pre-existing condition, which are defined not to include genetic information in the absence of a diagnosis of the condition related to such information. 7/29/13 Signed by the Governor.

Illinois Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

New Jersey Employment Nondiscrimination Enacted

Amends employment discrimination law. Prohibits employers from paying any of its employees who are a members of a protected class at a rate of compensation, including benefits, which is less than the rate paid by the employer to employees who are not members of the protected class for substantially similar work, when viewed as a composite of skill, effort and responsibility. Member of a protected class is defined an employee who has one or more characteristics, including genetic information, for which the law prohibits discrimination in employment. 4/24/2018 Approved P.L.2018, c.9.

Colorado Health Insurance Coverage Enacted

Amends the provision requiring health_insurance_coverage for mammography for an individual with a genetic predisposition. The amended version of the statute refers to guidelines of professional associations to determine coverage requirements. May 16, 2019 Signed by the Governor.

Massachusetts Health Insurance Coverage Enacted

This bill requires individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract to provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Signed by the Governor August 3, 2010.

Utah Privacy Enacted

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities. Signed by the Governor on 3/23/2016.

Arkansas Privacy Enacted

Amends the definition of personal information under Personal Information privacy Act. Protected personal information is defined to include biometric information such as DNA. 4/15/2019 HB 1943 is now Act 1030.

Kansas Privacy Enacted

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing. Approved by Governor on Wednesday, May 14, 2014.

New York Employment Nondiscrimination Enacted

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work. Protected class includes predisposing genetic characteristic. 4/3/2020 Signed by the Governor.

California Employment Nondiscrimination Enacted

A health benefit plan offered to a small employer, as defined in Section 1304(b) of PPACA and in Section 10753, may not establish rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the plan based on health status-related factors, including genetic information. Approved by the Governor June 28, 2014.

Louisiana Health Insurance Coverage Enacted

Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. 6/1/21 Signed by the Governor. Becomes Act No. 45. Effective 1/1/2022.

North Dakota Privacy, Research Enacted

This bill amends provisions in the state newborn screening law pertaining to the use of residual dried blood spots for research. The bill states that a person conducting research on blood spots, other specimens, or registry data that is maintained by the health department must follow IRB processes for human research, which must include obtaining parent or guardian authorization. 4/16/2015 Signed by the Governor.

Delaware Research, Use of Residual Newborn Screening Specimens Enacted

Amends the provision pertaining to use of stored blood specimens. Removes language permitting the Division of Public Health use of specimens for (1) quality assurance or performance improvement activities, including pilot studies, when a new disorder is being considered for addition to the panel; or (2) any other purpose authorized by law. research use in population based studies of de-identified specimens is permitted with parental consent. However, an amendment to the existing statute requires the destruction of blood specimens after screening and testing are complete. Signed by the Governor on 9/15/2021. Effective upon Governor's signature.

Minnesota Use of Residual Newborn Screening Specimens Enacted

Amends the statute governing the collection, storage, use and dissemination of genetic information by adding a section to specify that newborn screening activities are subject to the law. Requires the Commissioner of Health to evaluate the scientific and medical validity of a comprehensive and sustainable long-term storage and use plan for newborn screening test results. Approved by the Governor May 23, 2013.

Washington Health Insurance Nondiscrimination Enacted

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. April 17, 2019 Signed by the Governor. Effective immediately.

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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