?url_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Adc&rft.title=An+Exploratory+Ethnographic+Study+of+Issues+and+Concerns+with+Whole+Genome+Sequencing&rft.creator=De+Cristofaro%2C+E&rft.description=Progress+in+Whole+Genome+Sequencing+(WGS)+will%0D%0Asoon+allow+a+large+number+of+individuals+to+have+their+genome%0D%0Afully+sequenced.+This+lays+the+foundations+to+improve+modern%0D%0Ahealthcare%2C+enabling+a+new+era+of+personalized+medicine+where%0D%0Adiagnosis+and+treatment+is+tailored+to+the+patient%E2%80%99s+genetic%0D%0Amakeup.+It+also+allows+individuals+motivated+by+personal+curiosity%0D%0Ato+have+access+to+their+genetic+information%2C+and+use+it%2C+e.g.%2C+to+trace%0D%0Atheir+ancestry.+However%2C+the+very+same+progress+also+amplifies%0D%0Aa+number+of+ethical+and+privacy+concerns%2C+that+stem+from+the%0D%0Aunprecedented+sensitivity+of+genomic+information+and+that+are%0D%0Anot+well+studied.%0D%0AThis+paper+presents+an+exploratory+ethnographic+study+of%0D%0Ausers%E2%80%99+perception+of+privacy+and+ethical+issues+with+WGS%2C+as+well%0D%0Aas+their+attitude+toward+different+WGS+programs.+We+report+on%0D%0Aa+series+of+semi-structured+interviews%2C+involving+16+participants%2C%0D%0Aand+analyze+the+results+both+quantitatively+and+qualitatively.+Our%0D%0Aanalysis+shows+that+users+exhibit+common+trust+concerns+and+fear%0D%0Aof+discrimination%2C+and+demand+to+retain+strict+control+over+their%0D%0Agenetic+information.+Finally%2C+we+highlight+the+need+for+further%0D%0Aresearch+in+the+area+and+follow-up+studies+that+build+on+our%0D%0Ainitial+findings.&rft.publisher=Internet+Society&rft.contributor=Wagner%2C+D&rft.contributor=Smith%2C+M&rft.date=2014-04-27&rft.type=Proceedings+paper&rft.publisher=8th+NDSS+Workshop+on+Usable+Security+(USEC+2014)&rft.language=eng&rft.source=+++++In%3A+Wagner%2C+D+and+Smith%2C+M%2C+(eds.)++(Proceedings)+8th+NDSS+Workshop+on+Usable+Security+(USEC+2014)%2C+23+February+2014%2C+San+Diego%2C+California%2C+USA.+++Internet+Society+(2014)+++++&rft.format=text&rft.identifier=https%3A%2F%2Fdiscovery.ucl.ac.uk%2Fid%2Feprint%2F1450705%2F1%2FDe-Cristafaro_Exploratory_Ethnographic_Study_VoR.pdf&rft.identifier=https%3A%2F%2Fdiscovery.ucl.ac.uk%2Fid%2Feprint%2F1450705%2F&rft.rights=open