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Ethical Issues in Health Research with Novel Online Sources

American Journal of Public Health, Vol. 102, No. 12, pp. 2225-30

Posted: 3 Nov 2012 Last revised: 20 Sep 2014

Effy Vayena

University of Zurich - Institute for Biomedical Ethics

Anna C. Mastroianni

University of Washington - School of Law; University of Washington, Dept. of Health Services, School of Public Health; University of Washington, Dept. of Pediatrics and Department of Bioethics and Humanities, School of Medicine

Jeffrey P. Kahn

Johns Hopkins Berman Institute of Bioethics

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Date Written: March 20, 2012

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.

Keywords: data mining, social networking, bioinformatics, research ethics, health data sets, search volume patterns, genetics, privacy, informed consent

Suggested Citation

Vayena, Effy and Mastroianni, Anna C. and Kahn, Jeffrey P., Ethical Issues in Health Research with Novel Online Sources (March 20, 2012). American Journal of Public Health, Vol. 102, No. 12, pp. 2225-30. Available at SSRN: https://ssrn.com/abstract=2169612

Effy Vayena (Contact Author)

University of Zurich - Institute for Biomedical Ethics ( email )

Zurich, 8032
Switzerland

Anna C. Mastroianni

University of Washington - School of Law ( email )

William H. Gates Hall
Box 353020
Seattle, WA 98105-3020
United States

University of Washington, Dept. of Health Services, School of Public Health ( email )

Seattle, WA 98103
United States

University of Washington, Dept. of Pediatrics and Department of Bioethics and Humanities, School of Medicine ( email )

Seattle, WA 98195
United States

Jeffrey P. Kahn

Johns Hopkins Berman Institute of Bioethics ( email )

1809 Ashland Ave
Baltimore, MD 21205
United States
410-614-5679 (Phone)

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