Genomic Big Data and Privacy: Challenges and Opportunities for Precision Medicine

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dc.contributor.authorFrizzo-Barker, Julie
dc.contributor.authorChow-White, Peter A.
dc.contributor.authorCharters, Anita
dc.contributor.authorHa, Dung
dc.date.accessioned2020-06-06T13:06:30Z
dc.date.available2020-06-06T13:06:30Z
dc.date.issued2016
dc.date.issued2016
dc.description.abstractGenome science is rapidly shifting from research labs and biobanks to the clinical setting. The resulting genomic big data, or large-scale networked genetic material, is a disruptive technology. On one hand, clinical genomics advances life-saving innovation through precision medicine. On the other, the digital databases they are built upon raise new concerns for informational risk to personal privacy. While a traditional biomedical approach focuses on risks and benefits to the human body, our socio-technical analysis sheds lights on the emerging terrain of the human body as digital code. In this paper, we analyze emerging issues related to clinical genomics based on a 3-year collaborative clinical research project to develop a genomic test for Acute Myeloid Leukemia (AML) cancer in British Columbia (BC), the first of its kind in Canada. We found the most pressing issues for genomic researchers and clinicians were challenges around informed consent, return of results and return of incidental findings. In light of technological advances and the emerging context of networked privacy, we outline several recommendations for best practices in diffusing clinical genomics to the healthcare system.de
dc.identifier.doi10.1007/s10606-016-9248-7
dc.identifier.pissn1573-7551
dc.identifier.urihttp://dx.doi.org/10.1007/s10606-016-9248-7
dc.identifier.urihttps://dl.eusset.eu/handle/20.500.12015/3826
dc.publisherSpringer
dc.relation.ispartofComputer Supported Cooperative Work (CSCW): Vol. 25
dc.relation.ispartofseriesComputer Supported Cooperative Work (CSCW)
dc.subjectBig data
dc.subjectDatabases
dc.subjectDNA
dc.subjectGenomics
dc.subjectHealthcare
dc.subjectInformation technology
dc.subjectInformational risk
dc.subjectPrecision medicine
dc.subjectPrivacy
dc.titleGenomic Big Data and Privacy: Challenges and Opportunities for Precision Medicinede
dc.typeText/Journal Article
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gi.citation.startPage115
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