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Ethical Issues in Health Research with Novel Online SourcesEffy VayenaUniversity of Zurich - Institute for Biomedical Ethics Anna C. MastroianniUniversity of Washington - School of Law Jeffrey P. KahnJohns Hopkins University March 20, 2012 American Journal of Public Health, Forthcoming Abstract: Health-related research is increasingly drawing on novel sources of online data, such as crowdsourced information about disease outbreaks, consumer-supplied information provided to health or wellness Web sites, Internet search queries about personal health, and social network postings that identify health behaviors. We offer examples of online sources and their uses, identify ethical and policy issues they generate, and formulate key questions for future discussion and investigation. Further work in this area will require cross-disciplinary collaboration to develop ethics and policy guidance for the ethical use of these novel data sources in health-related research.
Number of Pages in PDF File: 6 Keywords: data mining, social networking, bioinformatics, research ethics, health data sets, search volume patterns, genetics, privacy, informed consent Accepted Paper SeriesDate posted: November 3, 2012Suggested CitationContact Information
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