Abstract

http://ssrn.com/abstract=2169612
 
 

References (49)



 


 



Ethical Issues in Health Research with Novel Online Sources


Effy Vayena


University of Zurich - Institute for Biomedical Ethics

Anna C. Mastroianni


University of Washington - School of Law

Jeffrey P. Kahn


Johns Hopkins University

March 20, 2012

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

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

Accepted Paper Series


Not Available For Download

Date posted: November 3, 2012 ; Last revised: June 7, 2013

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: http://ssrn.com/abstract=2169612

Contact Information

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

Jeffrey P. Kahn
Johns Hopkins University ( email )
1809 Ashland Ave
Baltimore, MD 21205
United States
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