IDCC13: Panel on confidentiality and open access to research data | Digital Curation Centre

"In his talk at IDCC, Ewan Birney, Associate Director of the EMBL European Informatics Institute, described how the field of genomics has paved the path to large-scale data sharing. The field now publicly confronts the issues arising from breaches to privacy as a result of such sharing. An editorial in Nature titled, 'Genetic Privacy,' was published just one day after the January 16 panel at IDCC. The piece discusses the 'privacy loophole' that was revealed when researchers at the Biomedical Research in Cambridge, Massachusetts were able to identify individuals whose genomes were sequenced by cross referencing individuals’ pattern of genetic markers with names from genealogical databases and public records containing age and location. The editorial calls upon the research community to come up with a solution soon because of the likelihood that the potential for exploitation of the privacy loophole will only grow. This panel suggested that our community is already well on its way. At the heart of the issue is the tension between privacy and openness. Funders are beginning to demand open access, advocacy groups to expect it, journals to require it, institutions to encourage it, and even researchers are increasingly aware of the benefits of sharing their data. But how can we reconcile this momentum with the long-held academic tradition of protecting the identity of research subjects? That was the topic of a panel on confidentiality and open research data at the 8th Annual International Data Curation Conference in Amsterdam on January 16, 2013..."