Genome Statute and Legislation Database

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

Prohibits a direct-to-consumer genetic testing business entity from sharing personally identifiable genetic test data or other personally identifiable information about a consumer with a third party without the express written consent of the consumer or a subpoena or court order. Died.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Removes provisions regulating an employer's and a health insurer's use of personal genetic information. Died.

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. Died.

Requires health insurance and Medicaid coverage for chromosomal microarray analysis. Died.

Prohibits the state sale of personally identifiable information, including genetic information. Died.

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended. Died.

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information. 4/22/20 House: Enacted, Chapter 1228. Effective 7/1/20.

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. Died.

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

Creates a study committee on human genome editing. Died.

Enacts measures to safeguard the privacy, confidentiality, security, and integrity of a consumer's genetic data resulting from direct-to-consumer genetic testing. Died.

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

Requires controllers of consumers' personal data to provide a consumer with copies of the consumer's personal data processed by the controller. Personal data includes genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Sets forth requirements regarding the deletion of consumer personal data, including genetic data, by controllers. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Establishes requirements on controllers that process consumers' personal data, including genetic data. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Establishes requirements for businesses related to personal information such as biometric information collected about consumers. Biometric information is defined to include DNA. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.
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Creates the Alabama Consumer privacy Act. Allows a consumer to request that a business: (1) disclose personal information that it collects; (2) delete certain personal information; (3) disclose the sale of certain personal information to third parties; and (4) allow a consumer to opt out of the sale of personal information. Prohibits a business from retaliating against a consumer for making a request for disclosure or for opting out and from selling the personal information of a consumer under 18 years of age. Personal information is defined to include biometric information such as DNA. Died.

Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session.

Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session.

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.

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.

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.

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.

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.

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.

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.

Requires health_insurance_coverage for genetic cystic fibrosis screenings for women. Died.

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.

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.

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.

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.

Requires individual health insurance policies to provide coverage for diagnostic and screening mammograms under certain circumstances. Positive genetic testing for the harmful variant of breast cancer gene one, breast cancer gene two or any other gene variant that materially increases the insured's risk for breast cancer fulfills the criteria for required coverage. Died.

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.

Concerns a study of consumer protection regulation of digital communications platforms. Introduced version included a provision related to sensitive data such as genetic data. However, this provision was deleted from the engrossed version of the bill. Died.

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.

Creates a penalty for the unauthorized public photography of an individual with a genetic or medical condition. Died.

Requires health_insurance_coverage, without any out-of-pocket expense, for: (1) diagnostic and screening mammograms, breast ultrasounds and magnetic resonance imaging of breasts for all insureds; (2) breast biopsies for all insureds, and (3) prophylactic mastectomies and breast reconstruction surgery for all insureds who have the harmful variant of breast cancer gene one (BRCA1), breast cancer gene two (BRCA2) or any similar gene variant that materially increases breast cancer risk. 1/27/2021 Referred to Joint Committee on Insurance and Real Estate.

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.

Establishes a framework for controlling and processing personal data. Establishes responsibilities and privacy protection standards for data controllers and processors. Grants consumers the right to access, correct, delete and obtain a copy of personal data and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data is defined as personal data that includes the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Died.