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
Date Written: February 20, 2013
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
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