Abstract

http://ssrn.com/abstract=2272177
 
 

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Caught in the Web: Informed Consent for Online Health Research


Effy Vayena


University of Zurich - Institute for Biomedical Ethics

Anna C. Mastroianni


University of Washington - School of Law

Jeffrey P. Kahn


Johns Hopkins University

February 20, 2013

Science Translational Medicine, Vol. 5, No. 173, pp. 1-3
University of Washington School of Law Research Paper

Abstract:     
Personal health data supplied by users of mobile devices, health apps, and the social Web and data from tracking of consumers’ online behavior — coupled with advanced bioinformatics tools — offer opportunities for use in health research. A central ethical question is whether individuals who have provided personal information online in nonresearch contexts have consented to research uses. Here, we explore this issue of informed consent, discuss some limitations of current practices, and offer recommendations for improving consent practices through a more tailored, context-sensitive approach that makes use of the dynamism of the Web-based context. Our proposals are rooted in the ethical imperative of protecting individual rights and respecting autonomy while enabling a dynamic research environment for the advancement of clinical medicine and public health.

Number of Pages in PDF File: 3

Keywords: informed consent, bioethics, medical research, research ethics, social media, informatics, big data, privacy

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Date posted: May 31, 2013  

Suggested Citation

Vayena, Effy and Mastroianni, Anna C. and Kahn, Jeffrey P., Caught in the Web: Informed Consent for Online Health Research (February 20, 2013). Science Translational Medicine, Vol. 5, No. 173, pp. 1-3; University of Washington School of Law Research Paper. Available at SSRN: http://ssrn.com/abstract=2272177 or http://dx.doi.org/10.2139/ssrn.2272177

Contact Information

Effy Vayena
University of Zurich - Institute for Biomedical Ethics ( email )
Zurich, 8032
Switzerland
Anna C. Mastroianni (Contact Author)
University of Washington - School of Law ( email )
William H. Gates Hall
Box 353020
Seattle, WA 98105-3020
United States

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