The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Privacy and Progress Inspires California Genetic Information Privacy Bill

In February 2013, California State Senator Alex Padilla introduced a bill declaring the intent of the legislature to enact new, comprehensive genetic privacy protections in the state.  Senate Bill 222 explains that existing law protects genetic privacy in some ways, but suggests that additional legislation is needed to provide individuals with comprehensive protection.

For example, California passed legislation in 2011, also sponsored by Senator Padilla, which prohibits discrimination on the basis of genetic information in housing, education, mortgage lending and elections – legislation that surpasses the federal Genetic Information Nondiscrimination Act in its reach and protections. The new bill declares the intent of the legislature to protect individuals from unauthorized collection, use, storage, and analysis of their genomic data.

The bill cites the October 2012 report by the Presidential Commission for the Study of Bioethical Issues, Privacy and Progress, as the impetus for proposing greater genetic privacy protections in the state.  The bill states: “the Presidential Commission for the Study of Bioethical Issues (Commission) released a report titled ‘Privacy and Progress in Whole Genome Sequencing,’ recommending the adoptions of policies to help ensure privacy and security, as the field of genomics advances.”

The bill reiterates the Commission’s recommendation that states establish a “consistent floor of privacy protections covering whole genome sequence data.”  It recognizes the great deal of variation in current protection of genomic privacy, and it seeks to provide comprehensive protection of genomic data for individuals in California.

Like Privacy and Progress, the bill seeks to reconcile individual privacy interests with public beneficence.  The legislation aims to protect individuals from unauthorized collection, storage, and disclosure of genetic information, and seeks to promote the use of genomic science for the advancement of medical progress.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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