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

How Democracy Can Inform Consent: Cases of the Internet and Bioethics
Carol C. Gould
Journal of Applied Philosophy, 22 March 2019; Special Issue 
Abstract
Traditional conceptions of informed consent seem difficult or even impossible to apply to new technologies like biobanks, big data, or GMOs, where vast numbers of people are potentially affected, and where consequences and risks are indeterminate or even unforeseeable. Likewise, the principle has come under strain with the appropriation and monetisation of personal information on digital platforms. Over time, it has largely been reduced to bare assent to formalistic legal agreements. To address the current ineffectiveness of the norm of informed consent, I suggest that we need 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. There is an important role for what we could call collective consent, and informed consent can only succeed in increasing individual agency if it is situated within enhanced forms of democratic decision‐making.

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