Here’s a recent talk I gave at a Friday lunch seminar on balancing issues of data access and genomic privacy. Please enjoy, and don’t hesitate to contact us with your questions or comments!
Squaring the Circle: Access and Genomic Privacy
There is an apparent contradiction at the heart of genomics research. On one hand, we as a society have a moral imperative to share data broadly — it is no exaggeration to say that access to data saves lives. On the other hand, genomic data contains a wealth of private information that must be protected for both ethical and legal reasons. We must not be tempted to choose between access and privacy protection; this is a false dichotomy. We must demand both.
In this talk, Knox Carey, Vice President of Technology Initiatives at Intertrust, will argue that access to data need not come at the expense of privacy. He will describe methods being developing at Genecloud for data privacy-preserving genomics research, and will explain how these methods address existing and emerging challenges in genomics research. He will also discuss the role of standardization in this area, focusing in particular on our work with the Global Alliance for Genomics and Health.