Genome Statute and Legislation Database

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Protects the privacy and security of computerized data, including personal information, owned or licensed by an agency. 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.

Health care service plans and carriers, agents or brokers offering health benefit plans to individuals or solicitors may not encourage or direct federally eligible defined individuals to refrain from an application for coverage because of genetic information. Plans, agents or brokers may not enter into any contract, agreement or arrangement with a solicitor that provides for or results in the compensation paid to a solicitor for the sale of a health care service plan contract or health benefit plan design to be varied because of genetic information.

A stop-loss carrier must offer coverage to all employees and dependents of employees of a small employer to which it issues a stop-loss insurance policy and may not exclude any employee or dependent on the basis of an actual or expected health status-related factor, including genetic information. Approved by the Governor October 1, 2013.

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.