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<https://discovery.ucl.ac.uk/id/eprint/1450705> <http://purl.org/dc/terms/title> "An Exploratory Ethnographic Study of Issues and Concerns with Whole Genome Sequencing"^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/eprint/1450705> <http://purl.org/ontology/bibo/abstract> "Progress in Whole Genome Sequencing (WGS) will\r\nsoon allow a large number of individuals to have their genome\r\nfully sequenced. This lays the foundations to improve modern\r\nhealthcare, enabling a new era of personalized medicine where\r\ndiagnosis and treatment is tailored to the patient’s genetic\r\nmakeup. It also allows individuals motivated by personal curiosity\r\nto have access to their genetic information, and use it, e.g., to trace\r\ntheir ancestry. However, the very same progress also amplifies\r\na number of ethical and privacy concerns, that stem from the\r\nunprecedented sensitivity of genomic information and that are\r\nnot well studied.\r\nThis paper presents an exploratory ethnographic study of\r\nusers’ perception of privacy and ethical issues with WGS, as well\r\nas their attitude toward different WGS programs. We report on\r\na series of semi-structured interviews, involving 16 participants,\r\nand analyze the results both quantitatively and qualitatively. Our\r\nanalysis shows that users exhibit common trust concerns and fear\r\nof discrimination, and demand to retain strict control over their\r\ngenetic information. Finally, we highlight the need for further\r\nresearch in the area and follow-up studies that build on our\r\ninitial findings."^^<http://www.w3.org/2001/XMLSchema#string> .
<https://discovery.ucl.ac.uk/id/eprint/1450705> <http://purl.org/dc/terms/date> "2014-04-27" .
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