In the last few months, we have seen major new efforts to securely share and collect large amounts of genetic data. While previously, genetic information collected by a doctor or researcher was not made widely available to other researchers, that era is now ending. Among these major advances toward the sharing of genetic information are a 'Global Alliance' of researchers from 40 countries to securely share genomic data, and new efforts for widespread collection of genetic information led by the UK government, Kaiser, the US Veteran's Affairs Administration. These efforts occur among a changing policy environment. In just the last week, the Supreme Court ruled that police can collect DNA from anyone they arrest, raising concerns for the construction of a 'gene panopticon,' and that genes cannot be patented, opening the doors for cheaper genetic testing. It is increasingly clear that some sort of 'Internet of Genes' will exist. However, a global database of genetic information is dangerous given recent evidence of how easy it is to identify individuals, learn about their HIV status, drug use, and disease risks from just their genetic data. The core challenge is to strike a balance between broad access and tight privacy of genetic data. This balance will require privacy technologies and the tools (and rules) to allow individuals to control their own genetic information. To conclude, commentary will be provided regarding upcoming pilot projects the GeneCloud team is exploring as well as some of the technical challenges involved in balancing genetic privacy with access.
Bio Rajaie Batniji, Chief Medical Advisor, GeneCloud Project
Rajaie Batniji is the Chief Medical Advisor of the Intertrust Genecloud initiative that is focused on creating a platform for trusted data-sharing in genomics. He is also a physician and political scientist at Stanford, studying international cooperation on health. Rajaie received his doctorate in international relations (D.Phil) from Oxford University where he studied as a Marshall Scholar and helped launch the Global Health Governance Programme. He also earned a M.D. from the University of California, San Francisco School of Medicine and M.A. and B.A. degrees in History from Stanford University. He has over 20 publications in top journals in medicine and public health, including The Lancet, British Medical Journal, and the Bulletin of the World Health Organisation.
Bio Knox Carey, VP, Technology Initiatives, GeneCloud Project
Knox Carey is a VP in the technology initiatives group, responsible for Intertrust's efforts in the healthcare space. Over the years Knox has played a variety of different roles at Intertrust ranging from standardization and architecture to business development. Most recently, he managed our technology efforts in greater China and helped to build up the Beijing office. Knox came to Intertrust in 1999 from Sony, where he was a senior research scientist in video and image compression. Knox graduated from Cornell University three times (BS 92, MEng 94, PhD 98).