8:30 Welcome Coffee
8:50 Welcome Address
9:00 - 10:00 Tutorial
Relentless advances in sequencing and bioinformatics are transforming biomedical research and the practice of medicine. To cope with increasing amounts of sensitive medical data, there is a clear need for cross-pollination between fields. In particular, data privacy has a crucial role to play, which requires specialists with complementary expertise to share a common understanding of basic concepts. My presentation will give an overview of the key concepts of human genomics, from DNA and chromosomes to the extent and nature of the genetic diversity observed in human populations. The current and future usage of genomic information in clinical settings will be described, in order to define the requirements for the efficient and secure implementation of genomic medicine. While contemporary medical genetics still mostly focuses on rare variants involved in Mendelian diseases or exceptional response to drugs, the toolbox of genomic medicine is about to massively expand to encompass neonatal and prenatal sequencing, oncogenomics, and complex trait genomics. In addition, direct to consumer genomics is likely to profoundly alter the classic patient-doctor interaction.
Jacques Fellay is a medical scientist with expertise in genomics and infectious diseases. He obtained his MD from the University of Lausanne in 2002 and is currently an Assistant Professor at the EPFL School of Life Sciences in Lausanne, Switzerland, and a Group Leader at the Swiss Institute of Bioinformatics. The focus of his research is the identification of human genetic factors that influence our response to infections. In 2012, he was awarded the Swiss National Latsis Prize for his work on HIV and HCV host genomics.
10:00 - 10:30 Break
10:30 – 12:10 Long-Talks Session
I’m 2.8% Neanderthal - The Beginning of Genetic Exhibitionism?
Lukasz Olejnik, Agnieszka Kutrowska, and Claude Castelluccia (INRIA and University Poznan)
Inference Control for Privacy-Preserving Genome Matching
Florian Kerschbaum, Martin Beck, and Dagmar Schönfeld (SAP)
Private Computation on Encrypted Genomic Data
Kristin Lauter, Adriana Lopez-Alt and Michael Naehrig (Microsoft Research and New York University)
Secure Evaluation Protocol for Personalized Medicine
Mentari Djatmiko, Arik Friedman, Roksana Boreli, Felix Lawrence, Brian Thorne, and Stephen Hardy (NICTA)
12:10 – 13:30 Lunch
13:30 - 14:30 Keynote
From the earliest days of the Human Genome Project, concerns have been raised about the need to protect genetic information for its own sake and to prevent misuse. With the advent of "chips" with millions of SNPs and next generation sequencing, the genetic results that can be generated have grown exponentially. In the clinic, these techniques can be used to diagnose disorders that are not otherwise understood and to target treatment. Some have proposed that newborns have their genomes sequenced so that their data will be available for the rest of their lives. All of these efforts raise questions not only about what parts of the genome should be examined but also where and how the results should be stored and accessed. A major question is whether only the results whose implications are well understood and for which there is clear intervention should be placed in the medical record or whether all of the data should be made accessible to both clinicians and patients. In the rese arch context, a major challenge is how to share research results with other investigators, as is increasingly required by funders, without exposing the individuals to whom they apply to undue risk of breach of privacy. In addressing these settings, we will explore how genetic information can be used in- and outside the medical environment as well as whether, and in what ways, genetic information differs from other clinical information in order to define what computer scientists should do to promote genetic privacy.
Ellen Wright Clayton, MD, JD is a graduate of Yale Law School and Harvard Medical School and is currently the Craig-Weaver Professor of Pediatrics, Professor of Law, and Co-Founder of the Center for Biomedical Ethics and Society at Vanderbilt University. She has been writing about ethical and legal issues raised by advances in genetics and genomics for more than 30 years, has served on the National Advisory for Human Genome Research, was Co-Chair of the ELSI Working Group of the International HapMap Project and of the eMERGE Consortium, and is currently the Director of Pediatric Platform of P3G and a member of the CELS Working Group of HUGO. She is an elected member of the Institute of Medicine of the National Academy of Sciences where she received the David P. Rall Medal for distinguished leadership.
14:30 - 16:00 Short-Talks Session
Position Paper - A Taxonomy of Genomic Privacy and Beyond
Kay Hamacher (Tu Darmstadt)
Simpler Protocols for Privacy-Preserving Disease Susceptibility Testing
George Danezis and Emiliano De Cristofaro (UCL)
Privacy-Preserving HIV Pharmacogenetics: A Real Use Case of Genomic Data Protection
Jean Louis Raisaro, Erman Ayday, Paul J. McLaren, Jean-Pierre Hubaux, and Amalio Telenti (EPFL and Lausanne University Hospital)
Securing Genomic Computations for Clinical Decision Support
W. Knox Carey, Nevenka Dimitrova, Bart Grantham, Vartika Agrawal, Jarl Nilsson, Ray Krasinski (Genecloud and Philips Research North America)
A Community Assessment of Data Perturbation Techniques on Privacy Protection for Human Genome Data
Xiaoqian Jiang, Lucila Ohno-Machado, Bradley Malin, Haixu Tang, Shuang Wang, Xiaofeng Wang, Yongan Zhao (UCSD, Indiana U,. Vanderbilt U)
16:00 - 16:30 Break
16:30 - 17:45 Panel
Privacy in Genomics: Where are we Today and What's on the Horizon?
Moderator: Bradley Malin, Vanderbilt University
List of Participants:
17:45 Closing Remarks