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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
California Health Insurance Coverage Died

Requires a health care service plan contract or a health insurance policy that is issued, amended, or renewed on or after January 1, 2015, to provide coverage for genetic testing for Lynch syndrome. 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 Health Insurance Nondiscrimination Died

Creates the California Guaranteed Health Care for All program, or CalCare, to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Declares that all California residents regardless of various characteristics, including genetic information, are entitled to full and equal accommodations, advantages, facilities, privileges, or services in all health care providers participating in CalCare. Carries over to 2022.

California Other Topics Statute

This statute was amended as part of 2011 CA SB 559, referred to as CalGINA, by adding genetic information to the list of characteristics addressed in the Unruh Civil Rights Act. All people in California are considered free and equal, and no matter what their sex, race, color, religion, ancestry, national origin, disability, medical condition, genetic information, marital status, sexual orientation, citizenship, primary language, or immigration status are entitled to the full and equal accommodations, advantages, facilities, privileges, or services in all business establishments of every kind whatsoever.

California Health Insurance Nondiscrimination Statute

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that covers a small employer, as defined in subsection (b) of Section 1304 of PPACA and in Section 1357.500 of the California Health and Safety Code, may not establish 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 any of the following health status-related factors, including genetic information.

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.

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. 9/30/2021 Approved by the Governor. Effective 1/1/2022.

California Health Insurance Coverage Died

A health insurance policy that is issued, amended, or renewed on or after January 1, 2022, may not apply a deductible, copayment, or coinsurance to coverage for screening services for prostate cancer for an insured who meets certain criteria. A person is 40 years of age or older and who is high risk, as determined by the attending or treating health care provider meets the criteria. High risk includes, but is not limited to, a person with a prostate who is Black, has a family history of prostate cancer, has a genetic predisposition to prostate cancer, or is a veteran. Carries over to 2022.

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.)

California Health Insurance Nondiscrimination, Privacy Statute

A person who negligently or willfully discloses genetic test results in an individuals medical records who is applying for or enrolled in a health care service plan, except with written authorization in the format specified, is subject to fines as set forth in the statutes.

California Health Insurance Nondiscrimination Statute

The statutes require carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information.

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.

California Health Insurance Coverage Died

Prohibits a health care service plan contract or a health insurance policy that covers prescription drug benefits from denying or otherwise limiting coverage of a genetically targeted drug for the treatment of Duchenne muscular dystrophy under specified circumstances. Died.

California Health Insurance Nondiscrimination Enacted

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that is offered to or covers a small employer may not establish 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 various health status-related factors such as genetic information. 10/8/2021 Approved by the Governor. Effective 1/1/2022.

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.

California Neonatal sequencing Pending

Newborn screening: genetic diseases: blood samples collected.

California Privacy, Research Statute

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research.

California Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Disability insurers covering hospital, medical and surgical expenses may not fail or refuse to accept an application, fail or refuse to issue insurance, cancel or refuse to renew insurance, charge a higher rate or premium, offer or provide different terms, conditions or benefits, or place a limitation on coverage based on genetic characteristics that may be associated with disability in a person of that persons offspring. These insurers also may not seek information about a persons genetic characteristics for non-therapeutic purposes. Specific penalties are set forth for violations. Life and disability insurers may not discriminate based solely on the fact that the person to be insured carries a gene that may be associated with disability in that person or the persons offspring, but which causes no adverse effects in the carrier, including but not limited to Tay-Sachs trait, sickle cell trait, thalassemia trait, and X-linked hemophilia trait.

California Other Topics Enacted

Requires the State Department of Health Care Services to provide individuals diagnosed with breast cancer information relating to breast cancer susceptibility gene (BRCA) mutations. The goal is to help achieve increased genetic counseling and screening rates of individuals for whom BRCA test results can inform treatment decisions. 10/12/2017 Chaptered by Secretary of State - Chapter 693, Statutes of 2017.

California Health Insurance Nondiscrimination Died

Creates the Healthy California Board, which is responsible for the establishment of the Healthy California program to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Consistent with the Unruh Civil Rights Act, the Board must promote nondiscrimination with respect to members and health care providers on the basis of genetic information and other characteristics. Died.

California Health Insurance Nondiscrimination Enacted

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that is offered to or covers a small employer may not establish 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 various health status-related factors such as genetic information. 10/9/2021 Approved by the Governor. Effective 1/1/2022.

California Privacy Died

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it�s privacy policies, at the point of sale of the product, and on product packaging. The notice must contain information about the company's privacy policy. Died.

California Health Insurance Nondiscrimination Enacted

This bill requires an issuer of a Medicare supplement contract, policy or certificate to adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008. Approved by the Governor July 2, 2009.

California Privacy, Research Pending

Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. 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. Carries over to 2022.

Displaying 51 - 75 of 1160

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