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Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

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  • The bill 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. Bill Status: Vetoed.

    • state bill
    • bill
    • genetic predisposition
    • disability
    • workers' compensation
    • industrial injury
    • permanent disability
    • California
    • bill status vetoed

  • 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. Bill Status: Enacted

    • state bill
    • bill
    • genetic disease
    • genetic disease testing fund
    • data management
    • patient confidentiality
    • blood samples
    • California
    • bill status enacted
    • health insurance nondiscrimination

  • 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. Bill Status: Died

    • state bill
    • bill
    • workers' compensation
    • genetic predisposition
    • disability
    • permanent disability
    • California
    • bill status 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. Bill Status: Died

    • state bill
    • bill
    • Bioinformatics
    • California
    • biological data analysis
    • statistical genetics
    • Clinical Laboratory Improvement Amendments
    • CLIA
    • post-CLIA
    • bill status died

  • 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. Bill Status: Enacted

    • state bill
    • bill
    • child coverage
    • genetic information
    • California
    • health care coverage
    • bill status enacted
    • health insurance nondiscrimination

  • 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. Bill Status: Enacted

    • state bill
    • bill
    • medical experimental treatment
    • human subjects protection
    • California
    • risk analysis
    • bill status 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. Bill Status: Enacted

    • state bill
    • bill
    • California
    • genetic information
    • genetic discrimination
    • bill status enacted
    • employment nondiscrimination

  • 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. Bill Status: Died

    • state bill
    • bill
    • California
    • genetic information privacy act
    • Privacy
    • genetic information
    • bill status died

  • 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. Bill Status: Enacted

    • state bill
    • bill
    • Informed Consent
    • consent exemption
    • life-threatening emergency
    • California
    • medical experimental treatment
    • bill status 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. Bill Status: Enacted

    • Patient Protection and Affordable Care Act
    • PPACA
    • bill
    • state bill
    • California
    • genetic information
    • Informed Consent
    • informed consent exemption
    • bill status enacted
    • health insurance nondiscrimination