Home Overview Press Room Blog Publications For Students about us

Privacy and Progress Inspires California Genetic Information Privacy Bill

by Nicolle StrandPresidential Commission for the Study of Bioethical Issues
March 12th, 2013

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

This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of biotechnology and public policy issues. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.copyright.gov/title17/92chap1.html#107. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.


home | overview | blog | publications| about us | donate | newsletter | press room | privacy policy

CGS • 1122 University Ave, Suite 100, Berkeley, CA 94702 • • (p) 1.510.665.7760 • (F) 1.510.665.8760