Online consent: how much do we need to know (original) (raw)

How Democracy Can Inform Consent: Cases of the Internet and Bioethics

Journal of Applied Philosophy, 2019

In this article, I analyze some of the limitations in the notion of informed consent in relation to the various social and technological contexts in which it is embedded. This principle has its origins in medical ethics and research ethics; I and others have subsequently proposed to extend this requirement to informational privacy online. However, traditional conceptions of informed consent seem difficult or even impossible to apply to new technologies like biobanks, big data, or the introduction of GMOs, where vast numbers of people are potentially affected, and where the consequences and risks are indeterminate or even unforeseeable. Likewise, the principle has come under strain with the appropriation and monetization of personal information on digital platforms, and with the accompanying (at times severe) intrusions on privacy and autonomy. Over time, it has largely been reduced to bare assent to formalistic legal agreements, which are required for access to online information or communication. To address the current ineffectiveness of the norm of informed consent, I suggest that we need to bring in a notion of structural injustice (on a distinctive interpretation, elaborated here, which takes account of unequal power and property relations). I then argue that in order to protect and enhance people's freedom, we have to go beyond traditional applied ethics and introduce perspectives from democratic theory and social philosophy. I attempt to show how applications of the "all-affected principle," together with new forms of democratic participation, deliberation, and representation can helpfully frame the narrower principle of informed consent. It will be seen that there is an important role for what we could call collective consent, and that informed consent can only succeed in increasing individual agency if it is situated within enhanced forms of democratic decision-making.