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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
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.

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.

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.

Oregon Health Insurance Coverage Enacted

A health benefit plan offered in Oregon must provide coverage for screening to determine whether counseling about BRCA testing is indicated. Governor signed. Effective 8/15/2017.

Illinois Employment Nondiscrimination, Privacy Enacted

Amends the state genetic nondiscrimination law for employment. An employer may not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information. 8/25/2017 Approved by the Governor. Effective 1/1/2018.

New Mexico Privacy Enacted

This bill amends the Genetic Information privacy Act by adding an exemption for clinical laboratories with regard to consent requirements. A laboratory conducting an analysis or test of a specific individual per a written order from a health care practitioner or the health care practitioner's agent, including by electronic transmission, may obtain, retain, transmit, or use an individual's DNA, genetic information, or test results without the individual's written and informed consent. Signed by the Governor 4/10/2015.

Colorado Privacy Enacted

Creates the Colorado privacy Act. Prohibits the processing of a consumer's sensitive data without first obtaining the consumer's consent. Sensitive data includes genetic or biometric that may be processed for the purpose of uniquely identifying an individual. 7/7/2021 Governor signed. Effective July 1, 2024.

Massachusetts Research Enacted

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Signed by the Governor 12/19/2014.

Utah Health Insurance Coverage Enacted

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21. March 26, 2019 Governor Signed. Effective 60 days after adjournment on March 14, 2019.

California Use of Residual Newborn Screening Specimens Enacted

This bill requires the health department to charge a fee to researchers and health care providers who have been approved by the department to use stored umbilical cord, pregnancy blood, or newborn blood samples for research to cover the costs of administering the program. Signed by the Governor October 11, 2007. (The bill goes into effect only if 2007 AB 34, which was enacted during the 2007 session, becomes law before January 2008.)

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.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

California Employment Nondiscrimination, Health Insurance Nondiscrimination Enacted

Amends state law prohibiting denial of full and equal access to benefits or discrimination in any program or activity that is conducted, operated, or administered by the state or by any state agency, is funded directly by the state, or receives any financial assistance from the state based on genetic information and other characteristics. The bill would remove the authority of those state agencies to promulgate regulations to prohibit discrimination and would require the investigation and enforcement of anti-discrimination provisions to be performed by to the Department of Fair Employment and Housing. Chaptered on 9/30/2016. However, the bill is effective on January 1, 2017 only if AB 2707, which pertains to racial profiling, is enacted. On 9/27/2016 the Governor vetoed AB 2707.

Louisiana Health Insurance Coverage Enacted

Requires any health coverage plan renewed, delivered or issued for delivery in Louisiana to provide coverage for genetic or molecular testing for cancer including but not limited to tumor mutation testing, next generation sequencing, hereditary germline mutation testing, pharmacogenomic testing, whole exome and genome sequencing, and biomarker testing. 6/1/21 Signed by the Governor. Becomes Act No. 43. Effective 1/1/2022.

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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