The International Cancer Genome Consortium's evolving data-protection policies

Abstract

The International Cancer Genome Consortium (ICGC) is an international initiative launched in 2008 to coordinate large-scale cancer genome studies from 50 different cancer types and subtypes of global clinical and societal importance. As of May 2014, 74 project teams in 17 countries in Asia, Australia, Europe and North America are analyzing more than 25,000 tumor genomes (<a href="http://www.icgc.org/">http://www.icgc.org/</a>). In addition to its goal of generating comprehensive catalogs of genomic abnormalities to facilitate better understanding, treatment and prevention of cancer, ICGC is committed to making the data it generates available to the international research community as rapidly as possible, with minimal restrictions on appropriate data use. Here, we describe the experience of ICGC in addressing privacy and confidentiality issues raised by recent articles that expose re-identification threats for research participants.