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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 Sort descending Primary Link Topic(s) Bill Status Summary
Arizona Privacy Enacted

Requires that genetic testing information be released only as authorized by state or federal law, including the Health Insurance Portability and Accountability Act privacy standards. Permits the release of genetic testing information to a health care provider who is providing care to the person tested and the health care provider's agent or employee. Allows a legal representative of a clinical laboratory that is in possession of the medical record to receive the genetic test and information derived from the genetic test when the laboratory is obtaining legal advice. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results. Signed by the Governor on May 22, 2019.

Arizona Privacy Died

Allows the release of genetic testing and information derived from genetic testing to the following, if the necessary requirements are met: an individual or entity that provides services to a health care provider or clinical laboratory, a statewide health information exchange, the health insurance carrier of the person tested, a nationally recognized accreditation organization, a health professional licensing board in the state, and an entity that is responsible for the payment of a health care provider charges. Died.

Arizona Privacy Statute

A person may not order or require the performance of a genetic test without written informed consent. Genetic test results may not be disclosed without the express consent of the subject of the test or the person authorized to consent for that person.

Arizona Other Topics Died

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Arizona Employment Nondiscrimination Statute

Employers may not discriminate against an individual based on genetic test results, notwithstanding professionally developed ability tests that are not designed to discriminate because of race, color, religion, sex or national origin.

Arizona Privacy Died

Establishes requirements for controllers upon the receipt of a verified request from consumers to exercise their rights with respect to the processing of personal data, including genetic data for the purpose of uniquely identifying a person. Died.

Arizona Coverage and reimbursement Introduced

Cancer screening; coverage; gene mutation.

Arizona Privacy Died

Amends the state genetic privacy law. Declares genetic testing and the information derived from it, whether in the possession of a public or private entity, to be the exclusive private property of the person tested. Died.

Arizona Other Topics Died

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Arizona Privacy Statute

Parents must 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 newborn screening.

Arizona Privacy, Research Statute

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

Arizona Health Insurance Coverage Died

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

Arizona Health Insurance Nondiscrimination Statute

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

Arkansas Health Insurance Nondiscrimination Statute

Preexisting condition exclusions may not be based on genetic information in the absence of a diagnosis. Insurers issuing group health plans may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

Arkansas Health Insurance Coverage Enacted

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors. 3/29/2017 Enacted.

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.

Arkansas Privacy Statute

Provides for the protection of personal information maintained by businesses, including biometric information. Biometric information is defined to include DNA.

Arkansas Employment Nondiscrimination Statute

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

Arkansas Privacy, Research Statute

No individual records of subjects in genetic research studies approved by an institutional review board or conducted subject to the requirements of the federal common rule may be subpoenaed or subject to discovery in civil suits except in cases where the information in the records is the basis of the suit. These records may not be disclosed to an insurer or employer without the informed written consent of the subject. Stored tissues, including blood, that arise from surgery or other diagnostic and therapeutic steps may be disclosed for genetic or other research studies if the patients name or social security number is not attached to or included with the specimen. Identifying information may be disclosed with the informed written consent of the individual. Published results may not identify a subject unless the individual has provided specific informed consent.

Arkansas Privacy Died

Enacts the Parents' Bill of Rights. A parent must consent in writing before a biometric scan of a minor child or a record of a minor child's blood or DNA is created, shared, or stored. April 2, 2015 Recommended for study in the Interim by Joint Interim Committee on JUDICIARY COMMITTEE- HOUSE

Arkansas Health Insurance Nondiscrimination Statute

Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test.

Arkansas Health Insurance Coverage Statute

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

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.

California Research Statute

Provides for the protection of human subjects participating in medical experiments. Enacts the Experimental Subject's Bill of Rights, which details informed consent requirements.

California Research Enacted

This bill amends existing law on the protection of human subjects, which provides an exemption until January 1, 2011 for any medical experimental treatment that benefits a patient subject to a life-threatening emergency if prescribed conditions are met. This bill provides that this exemption remains in effect until January 1, 2014. Signed by the Governor July 15, 2010.

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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