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.
State Sort descending | Primary Link | Topic(s) | Bill Status | Summary |
---|---|---|---|---|
California | California SB 625 | Neonatal sequencing | Pending | Newborn screening: genetic diseases: blood samples collected. |
California | 2017 State Bills California 2017 AB 1386 | 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 | 2017 State Bills California 2017 SB 562 | 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 | State StatuteCalifornia: Cal. Insurance Code 10140 et seq. | 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 | 2021 State Bills California 2021 SB 326 | 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 | 2020 State Bills California 2020 AB 2222 | 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 | 2009 State Bills California 2009 AB 1543 | 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 | State StatuteCalifornia: Cal. Civil Code 56.265 | Other Lines of Insurance Nondiscrimination | Statute | A person who underwrites or sells an annuity contract or contracts insuring, guaranteeing, or indemnifying against loss, harm, damage, illness, disability, or death, and any affiliate of that person or entity, shall not disclose individually identifiable information concerning the medical or genetic history of a customer for use with regard to granting credit. |
California | 2021 State Bills California 2021 SB 172 | 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. |
California | 2017 State Bills California 2017 AB 375 | Privacy | Enacted | Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. Note: AB 375 was amended in June of 2018. Earlier versions of the bill do not address biometric information, including DNA. June 28, 2018 Signed by the Governor. |
California | 2018 State Bills California 2018 AB 2765 | Employment Nondiscrimination | Died | Prohibits discrimination in a digital marketplace or otherwise acting upon applications to participate with a digital marketplace as a marketplace contractor based on an individual's genetic characteristics. Died. |
California | State StatuteCalifornia: Cal. Insurance Code 10146 et seq. | Other Lines of Insurance Nondiscrimination | Statute | Tests for genetic characteristics may not be required to determine insurability for life and disability income insurance except for policies contingent on review or testing for other diseases and conditions and only with informed consent. Policies may only limit benefits otherwise payable if loss is caused or contributed to by the presence or absence of genetic characteristics if the insurer imposes limitations for other medical conditions that present an increased risk. A life or disability income insurer may not request a genetic test to determine eligibility for hospital, medical or surgical insurance coverage or coverage under a nonprofit hospital service or health care service plan. The statutes set forth civil and criminal penalties for violations. |
California | 2021 State Bills California 2021 SB 41 | Privacy, Research | Enacted | 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. 10/6/2021 Approved by the Governor. Chaptered by Secretary of State. Chapter 596, Statutes of 2021. Effective January 1, 2022. |
California | 2021 State Bills California 2021 AB 17 | 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 | 2009 State Bills California 2009 SB 1330 | Use of Residual Newborn Screening Specimens | Enacted | This bill specifies that money from the genetic disease testing fund may be used for costs related to data management, and newborn blood collection, storage, retrieval, processing, inventory, and shipping. The health department, any entities approved by the department, and researchers shall maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and(4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes. Signed by the Governor September 25, 2010. |
California | 2007 State Bills California 2007 SB 164 | Use of Residual Newborn Screening Specimens | Died | This bill amends existing law pertaining to pregnancy blood samples. Existing law provides for the use of samples for approved research projects and establishes confidentiality and privacy protections with regard to samples and related personal information. This bill renames the term "pregnancy" blood samples by referring to them as "newborn" blood samples. Measure failed. |
California | State StatuteCalifornia: Cal. Government Code 12920 et seq.and 11135 | Employment Nondiscrimination | Statute | These statute sections contain provisions from 2011 CA SB 559, referred to as CalGINA. The opportunity to seek, obtain, and hold employment without discrimination because of genetic information, is recognized as a civil right. It is an unlawful employment practice, unless based on a bonafide occupational qualification, to subject any employee, applicant or other person to a test for the presence of a genetic characteristic. In addition, a person in the State of California may not, on the basis of genetic information, be unlawfully denied full and equal access to the benefits of, or be unlawfully subjected to discrimination under, 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. |
California | 2018 State Bills California 2018 AB 2358 | Employment Nondiscrimination | Enacted | Prohibits discrimination against apprentices or applicants for apprenticeships in the building and construction trade based on genetic information. 9/22/2018 Chaptered by Secretary of State - Chapter 675, Statutes of 2018. |
California | 2019 State Bills California 2019 AB 1020 | Employment Nondiscrimination | Died | Prohibits licensing boards from requiring an examination or establishing any qualification for licensing that has an adverse impact on any class because of various attributes, including genetic information. Died. |
California | 2021 State Bills California 2021 SB 718 | 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. 10/8/21 Approved by the Governor. Effective 1/1/2022. |
California | 2021 State Bills California 2021 SB 480 | Other Topics | Died | require the Metropolitan Water District of Southern California to adopt rules relating to inappropriate conduct, as defined, by board members, officers, and employees. Inappropriate conduct is defined as any conduct toward others that is physical, verbal, or visual based on or because of various characteristics, including genetic information. Carries over to 2022. |
California | 2010 State Bills California 2010 AB 2244 | Health Insurance Nondiscrimination | Enacted | This bill requires 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. Signed by the Governor on September 30, 2010. |
California | 2009 State Bills California 2009 SB 145 | Other Topics | Died | This bill prohibits the denial of a workers' compensation claim solely because the motivation behind what caused the employee's injury or injury resulting in death was related to an immutable characteristic of the employee. The bill also states that physicians assigning apportionment to the causes of permanent disability by finding what approximate percentage of the disability is a direct result of the employment-related injury versus other factors may not consider genetic predisposition a cause or other factor of disability. Measure failed. |
California | State StatuteCalifornia: Cal. Health and Safety Code 124975 et seq. | Use of Residual Newborn Screening Specimens | Statute | All testing results and personal information from hereditary disorders programs obtained from any individual, or from specimens from any individual, is confidential and is considered a confidential medical record except for information that the individual, parent, or guardian consents to be released, provided after being fully informed of the scope of the information requested to be released, of all of the risks, benefits, and purposes for the release, and of the identity of those to whom the information will be released or made available, except for data compiled without reference to the identity of any individual, and except for research purposes, provided that pursuant to the Common Rule The research must first be reviewed and approved by an IRB. The health department, any entities approved by the department, and researchers must maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and (4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes. |
California | 2019 State Bills California 2019 SB 180 | Other Topics | Enacted | Prohibits a person from selling a gene therapy kit unless the seller includes a notice on the seller�s internet website that is displayed to the consumer prior to the point of sale, and on a label on the package, stating that the kit is not for self-administration. Chaptered by Secretary of State. Chapter 140, Statutes of 2019. Effective January 1, 2020. |
California | 2019 State Bills California 2019 SB 731 | Privacy | Died | Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection 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 such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died. |
California | 2021 State Bills California 2021 AB 60 | 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 | 2010 State Bills California 2010 SB 1187 | 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. |
California | 2009 State Bills California 2009 SB 482 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Died | This bill states that all biological data derived from post-CLIA bioinformatics services shall be considered to contain genetic characteristics, as defined in section 1374.7 of the Health and Safety Code and section 10146 of the Insurance Code and is subject to the prohibitions in those sections of the statutes. Measure failed. |
California | State StatuteCalifornia: Cal. Health and Safety Code 24170 et seq. | 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 | 2021 State Bills California 2021 AB 172 | Privacy, Research | Enacted | 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 transfers 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. 10/8/21 Approved by the Governor. Effective immediately. |
California | 2020 State Bills California 2020 AB 2301 | Privacy | Died | Amends statute pertaining to security requirements for business that own, license, or maintain personal information about a California resident. This bill would add genetic information to the definition of personal information under the law. Died. |
California | State StatuteCalifornia: Cal. Business and Professions Code 22949.50 et seq. | Other Topics | Statute | Prohibits the sale of a gene therapy kit unless the seller includes a notice on the seller�s internet website to the consumer prior to the point of sale and on a label on the package stating that the kit is not for self-administration. |
California | 2011 State Bills California 2011 SB 559 | Employment Nondiscrimination | Enacted | This bill, referred to as CalGINA, prohibits discrimination based on genetic information in several areas in addition to those addressed by existing law, including in housing, at certain business facilities, at state agencies, entities funded by or receiving financial assistance from the state, and in the provision of emergency services. Signed by the Governor on September 6, 2011. |
California | 2012 State Bills California 2012 SB 1267 | Privacy, Research | Died | This bill creates the Genetic Information privacy Act. The bill prohibits any person from obtaining, analyzing, or disclosing genetic information without the written authorization of the individual to whom the information pertains and requires a separate written authorization for each separate disclosure of an individual's genetic information, with some exceptions such as for law enforcement. The bill permits disaggregated and anonymized data to be used in the manner specified that was collected before the bill's enactment without the authorization described above. The bill also permits the use of disaggregated and anonymized data, as specified, if written authorization is obtained and the data is used for a purpose authorized by the individual to whom the information pertains. Measure failed. |
California | State StatuteCalifornia: Cal. Health and Safety Code 130200 et seq. | 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 | 2021 State Bills California 2021 AB 114 | Health Insurance Coverage | Enacted | Rapid Whole Genome Sequencing, including individual sequencing, trio sequencing for a parent or parents and their baby, and ultra-rapid sequencing, is a covered benefit for any Medi-Cal beneficiary who is one year of age or younger and is receiving inpatient hospital services in an intensive care unit. Carries over to 2022. |
California | 2020 State Bills California 2020 AB 2640 | Health Insurance Coverage | Died | Prohibits an individual or group health care service plan contract or health insurance policy issued, amended, delivered, or renewed on or after January 1, 2021, from requiring prior authorization for genetic biomarker testing for an enrollee or insured with metastatic or advanced stage 3 or 4 cancer. Died. |
California | State StatuteCalifornia: Cal. Civil Code 1102.6g | Other Topics | Statute | Prohibits any person or other entity whose business includes performing appraisals of residential real property from discriminating against any person in making available those services, or in the performance of those services, because of various characteristics, including genetic information. Requires every contract for the sale of real property to contain a notice regarding improper or illegal considerations such as genetic information in appraisal of property. |
California | 2013 State Bills California 2013 AB 58 | Research | Enacted | This bill continue the exemption to informed consent requirements for human subjects in the event of a life-threatening emergency indefinitely. The existing exemption is set to expire on January 1, 2014. Approved by the Governor on Oct. 4, 2013. |
California | 2013 State Bills California 2013 SB 222 | Privacy | Died | This bill states that it is the intent of the Legislature to enact legislation to protect individuals from the unauthorized use of their genetic information, ensure that genetic information is personal information that is not collected, stored, or disclosed without the individual's authorization, provide protections for the collection, storage, and authorized use of genetic information, and promote the use of genetic information for legitimate reasons, including, but not limited to, health care, research, advancement of medicine, and educational purposes, as the field of genomics advances. Died. |
California | State StatuteCalifornia: Cal. Health and Safety Code 1358.24, and Insurance Cod… | Health Insurance Nondiscrimination | Statute | An issuer of a Medicare supplement contract must adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008 (Public Law 110-233). |
California | 2021 State Bills California 2021 AB 825 | Privacy | Enacted | Amends existing law to protect the privacy and security of computerized data, including personal information, owned or licensed by an agency. This bill adds genetic data to the scope of personal information under the law. Genetic data is defined as any data that results from the analysis of a biological sample of an individual, or from another source 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 analysis of the biological sample or other source, and any information extrapolated, derived, or inferred therefrom. 10/5/21 Approved by the Governor. Effective 1/1/2022. |
California | 2020 State Bills California 2020 AB 3215 | Other Topics | Died | Establishes the Commission on the State of Hate. Requires the commission to advise the Legislature, the Governor, and state agencies on, among other things, policy recommendations to promote intersocial education designed to foster mutual respect and understanding among California�s diverse population. Appointees to the commission are comprised of experts in combating hate, intolerance, and discrimination on the basis of various factors such as genetic information. Died. |
California | State StatuteCalifornia: Cal. Civil Code 1798.100 et seq. | Privacy | Statute | Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. On or before January 1, 2020, the Attorney General must solicit broad public participation to adopt regulations to further the requirements set forth in the law. |
California | 2013 State Bills California 2013 Extraordinary Session SBX1 2 | 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 | 2013 State Bills California 2013 SB 799 | 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. |
California | State StatuteCalifornia: Cal. Health and Safety Code 1374.7, Insurance Code 101… | Health Insurance Nondiscrimination | Statute | Health care service plans, self-insured employee welfare benefit plans, and multiple employer welfare arrangements may not refuse to enroll any person, refuse to accept or renew a subscriber, charge a higher rate, or offer different terms, conditions or benefits on the basis of genetic characteristics that may be associated with disability in that person or that persons offspring. A plan may not seek information about genetic characteristics for non-therapeutic purposes. Specific penalties are set forth for violations by self-insured employee welfare benefit plans and multiple employer welfare arrangements. |
California | 2021 State Bills California 2021 AB 948 | Other Topics | Enacted | Prohibits any person or other entity whose business includes performing appraisals of residential real property from discriminating against any person in making available those services, or in the performance of those services, because of various characteristics, including genetic information. Requires every contract for the sale of real property to contain a notice regarding improper or illegal considerations such as genetic information in appraisal of property. 10/5/21 Approved by the Governor. Effective 1/1/2022. |
California | 2020 State Bills California 2020 SB 1423 | Employment Nondiscrimination | Died | Requires any contracting entity that contracts with independent contractors to provide services to, on behalf of, or through the contracting entity on a freelance or per-gig basis, or virtual platform that enables third parties, including independent contractors, to transact with one another for services, or through which independent contractors can market, promote, or advertise their services to third parties, to maintain a written policy against the discrimination of an independent contractor on the basis of genetic information and other factors. Summary based on version of bill as amended on 5/6/2020 when all language from prior introduced version of bill was stricken. Died. |
Last updated: February 8, 2024