Caught in the Web: Informed Consent for Online Health Research

Science Translational Medicine, Vol. 5, No. 173, pp. 1-3

Posted: 31 May 2013 Last revised: 2 Oct 2017

See all articles by Effy Vayena

Effy Vayena

ETH Zurich

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

Date Written: February 20, 2013

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.

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

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, Available at SSRN: https://ssrn.com/abstract=2272177 or http://dx.doi.org/10.2139/ssrn.2272177

Effy Vayena

ETH Zurich ( email )

Zurich, 8001
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

HOME PAGE: https://www.law.washington.edu/directory/profile.aspx?ID=144

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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