Ethical Issues in Health Research With Novel Online Sources
Effy Vayena is with the Institute of Biomedical Ethics, University of Zürich, Zürich, Switzerland. Anna Mastroianni is with the School of Law and Institute for Public Health Genetics, University of Washington, Seattle. Jeffrey Kahn is with the Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.American Journal of Public Health (Impact Factor: 4.55). 10/2012; 102(12). DOI: 10.2105/AJPH.2012.300813
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. (Am J Public Health. Published online ahead of print October 18, 2012: e1-e6. doi:10.2105/AJPH.2012.300813).
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