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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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 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 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 Health Insurance Nondiscrimination Enacted

This bill amends existing law that prohibits health benefit plans from terminating coverage based on a health status-related factor, including genetic information, by adding a group disability policy or a certificate of insurance for a group disability policy that is not issued in the state of Arizona to the definition of "health benefit plan." Signed by the Governor on April 28, 2008.

Arizona Health Insurance Nondiscrimination Died

This bill prohibits health care service organizations from imposing pre-existing condition limitations or exclusions. Genetic conditions in the absence of a diagnosis related to the condition are not considered pre-existing conditions and may not result in a pre-existing condition limitation or exclusion. Measure failed.

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 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.

Arizona Other Topics Died

Amends statute pertaining to laboratory testing without a healthcare provider's order. Defines laboratory testing to include pharmacogenetic testing. Died.

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.

Arizona Privacy Enacted

This bill amends state law pertaining to genetic testing. New provisions include that a person may not order a genetic test without the informed consent of the person being tested. Signed by the Governor on 3/17/2016. Effective August 6, 2016.

Arizona Privacy Died

Prohibits schools and school service providers from collecting or possessing biometric information of elementary or secondary school students unless the school service provider: (1) develops a written policy for the collection, retention, disclosure and destruction of biometric information; and (2) obtains a written release to collect biometric information. Sets forth protections for biometric information, if collected. Biometric information is defined as information derived from any biometric identifier used to identify an individual. Died.

Arizona Health Insurance Nondiscrimination Statute

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

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.

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 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 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 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.

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.

California Privacy, Research Statute

Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements.

California Health Insurance Nondiscrimination Enacted

Prohibits a policy or contract that covers a small employer, as defined in Section 1304(b) of PPACA and in Section 1357.500, or health care service plans offered outside the American Health Benefit Exchange required by PPACA from establishing rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the policy or contract based on health status-related factors, including genetic information. Approved by the Governor May 9, 2013.

California Health Insurance Coverage Died

Requires every health care service plan contract, except a specialized health care service plan contract to provide coverage for genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) under certain circumstances. 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. 

  • 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: September 14, 2023