Genome Statute and Legislation Database

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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

This bill prohibits the reduction of an employees permanent total disability when the disability is a result of a work-related injury or a work-related injury combined with a congenital, genetic or similar conditions except that the law does not apply to reductions in recovery or apportionment allowed pursuant to Colorado Supreme Court decision in Anderson v. Brinkhoff, 859 P.2d 819, (Colo. 1993). Signed into law June 2, 2008.

This bill amends definitions in the Colorado genetic nondiscrimination in health insurance law. The bill also adds a new section to the Colorado statutes pertaining to limitations on disclosure of genetic information and allows the use of genetic information by research facilities provided that the information is not disclosed to third parties other than to an individual's physician with his or her consent. Signed by the Governor May 25, 2010.

This bill amends section 10-3-1104.6 of the statutes by modifying a provision on limitations on disclosure of genetic information. The list of public health entities exempt from limitations on disclosure when conducting certain activities is reworded to include county, district or municipal public health agencies. Signed by the Governor on June 10, 2010.

This bill amends existing statutes pertaining to mammography coverage for persons with a predisposition to breast cancer by amending provisions related to copayments and deductibles and the frequency of mammography coverage requirements (breast cancer screening with mammography required annually.) Signed by the Governor on May 13, 2013.

Prohibits direct primary health care providers from discriminating in the selection of patients on the basis of genetic information and other protected classes. 4/24/2017 Signed Act.

Amends the provision requiring health_insurance_coverage for mammography for an individual with a genetic predisposition. The amended version of the statute refers to guidelines of professional associations to determine coverage requirements. May 16, 2019 Signed by the Governor.

Creates the Colorado privacy Act. Prohibits the processing of a consumer's sensitive data without first obtaining the consumer's consent. Sensitive data includes genetic or biometric that may be processed for the purpose of uniquely identifying an individual. 7/7/2021 Governor signed. Effective July 1, 2024.

Adds tomosynthesis to health_insurance_coverage requirements if a woman is believed to be at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing or other indications as determined by a woman's physician or advanced practice registered nurse. June 2, 2016 Approved. Effective January 1, 2017.

Requires that all research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the health commissioner. 6/23/2017 Signed by the Governor. Effective 10/1/2017.

Creates a health data collaborative working group to examine and make recommendations regarding (1) precision medicine and personalized health; (2) economic growth initiatives for businesses working in certain scientific areas; (3) health data access, privacy and security initiatives; and (4) platforms for collecting health data in order to understand the interplay between genetic, behavioral and environmental factors in the incidence of disease or illness. 6/30/2017 Signed by the Governor. Effective immediately.

Creates a task for concerning consumer privacy. The introduced version of the bill was amended to create a task force rather than set forth certain requirements pertaining to the privacy of personal information such as DNA. Signed by the Governor 7/9/2019.

Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record. 7/7/2021 Signed by the Governor. Effective October 1, 2021.

Prohibits group health insurers from establishing rules for eligibility of an individual to enroll based on a health status related factor of individuals, including genetic information. Prohibits individual health insurers from establishing rules for eligibility of an individual to enroll under the terms of the coverage based on health status-related factors, including genetic information. Signed by the Governor on July 15, 2013.

This bill addresses informed consent for disclosing genetic information by adding those individuals authorized to access EMR and DHIN. Signed by the Governor on 7/27/2015.

Prohibits utilizing newborn screening stored blood specimens or stored data without parental consent, except for population based studies in which all identifying information is removed. Blood spots may be used within the Division of Public Health for quality assurance or performance improvement activities, including pilot studies when a new disorder is being considered for addition to the panel, or may be used by Division of Public Health for any other purpose authorized by law. Jul 15, 2015 - Signed by Governor.

Establishes protections for personal information, including a deoxyribonucleic profiles, owned, maintained, or licensed by businesses in the state. Businesses must implement and maintain reasonable procedures and practices to prevent the unauthorized access to or acquisition, use, modification, disclosure, or destruction of personal information collected or maintained in the regular course of business. 8/17/2017 Signed by the Governor. Effective 4/14/2018.

Amends the provision pertaining to use of stored blood specimens. Removes language permitting the Division of Public Health use of specimens for (1) quality assurance or performance improvement activities, including pilot studies, when a new disorder is being considered for addition to the panel; or (2) any other purpose authorized by law. research use in population based studies of de-identified specimens is permitted with parental consent. However, an amendment to the existing statute requires the destruction of blood specimens after screening and testing are complete. Signed by the Governor on 9/15/2021. Effective upon Governor's signature.

Amends the state insurance law pertaining to the use of genetic information. Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose. 6/30/2020 Approved by the Governor. Effective 7/1/2020.

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 6/29/21 Approved by the Governor. Effective 7/1/2021.

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021.

Relating to determination of paternity, so as to align evidentiary medical and genetic testing with the Uniform Parentage Act of 2017.

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. Act 587 Effective 1/1/2021.

If a firefighter is diagnosed with breast cancer after a five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present. Signed by Governor on March 30, 2016. Effective: 07/01/2016.

This bill requires coverage for a mammogram at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. This bill also requires coverage for a comprehensive ultrasound screening of an entire breast or breasts if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if the woman is at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's health care provider. Signed by the Governor August 24, 2007.

This bill amends the Genetic Information privacy Act. The bill adds and amends definitions under the law, makes changes to the employment provisions, adds requirements to be consistent with federal laws such as GINA, and further specifies prohibited actions by covered entities. Monetary penalties are increased, and a private right of action is afforded to any person alleging a violation of the law. The bill allows local governments to enact genetic privacy measures equal to or greater than the protections provided under state law. Approved by the Governor August 26, 2008.

Amends the Genetic Information privacy Act to add a provision related to electronic health records. The bill states that the disclosure of genetic information, when allowed, must be performed in accordance with the minimum necessary standard when required under HIPAA. Approved by the Governor August 25, 2014.

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

Amends the state genetic nondiscrimination law for employment. An employer may not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information. 8/25/2017 Approved by the Governor. Effective 1/1/2018.