How Can Photo Sharing Inspire Sharing Genomes?
People usually are aware of the privacy risks of publishing photos online, but these risks are less evident when sharing human genomes. Modern photos and sequenced genomes are both digital representations of real lives. They contain private information that may compromise people’s privacy, and still, their highest value is most of times achieved only when sharing them with others. In this work, we present an analogy between the privacy aspects of sharing photos and sharing genomes, which clarifies the privacy risks in the latter to the general public. Additionally, we illustrate an alternative informed model to share genomic data according to the privacy-sensitivity level of each portion. This article is a call to arms for a collaborative work between geneticists and security experts to build more effective methods to systematically protect privacy, whilst promoting the accessibility and sharing of genomes.
KeywordsPrivacy Data sharing Biology and genetics
This work was partially supported by the Fundação para a Ciência e para a Tecnologia, through the LaSIGE (UID/CEC/00408/2013) and BioISI research units (UID/MULTI/04046/2013), by the Fonds National de la Recherche Luxembourg (FNR) through the PEARL grant FNR/P14/8149128, and by the European Commission, through the BiobankCloud (FP7-ICT-317871) and SUPERCLOUD (H2020-ICT-643964) projects.
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