The anonymity of genetic data, a vulnerable principle?

Publié le : 30 January 2013
The journal Science dated 18 January has published the results of a study carried out by American scientists which reveals "the vulnerability of the anonymity of genetic data obtained in the framework of research on the human genome." The authors write that "with only a computer, Internet access and information accessible to the public online, a team of researchers was able to identify nearly 50 men and women who had submitted samples of saliva as participants in genomic studies whose results were, however, stored in data banks without reference to their identity." The principal author of the study, Yaniv Erlich, a Fellow of the Whitehead Institute for Biomedical Research, says that "this is an important result that points out the potential for breaches of privacy in genomics studies." To carry out their study, the "researchers used the genetic information of individuals whose genomes were sequenced and made publicly available as part of the 1000 Genomes Project,”an international study aimed at drawing up a detailed catalogue of human genetic variations around the world. The scientists came to the conclusion that "the posting of genetic data from a single individual can reveal deep genealogical ties and lead to the identification of a distantly-related person who may have no acquaintance with the person who released that genetic data.” Melissa Gymrek, co-author of the study, gives an example: "We show that if, for example, your Uncle Dave submitted his DNA to a genetic genealogy database, you could be identified."    

Consequently, in the United States, the scientific community as well as the general public fear that these confidential genetic data that can "reveal predispositions to certain diseases" could be used by insurance companies or employers.  

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