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Preventing “Exit,” Eliciting “Voice”

Authors: Galasso, Ilaria; Geiger, Susi;

Preventing “Exit,” Eliciting “Voice”

Abstract

This conceptual chapter evokes Albert Hirschman’s classic distinction between “exit” and “voice” to ascertain the potential for individuals to voice their concerns in the context of sharing data for genetics and personalized precision medicine initiatives. It elaborates the emerging framework of participatory medicine as a form of “invited activism” and goes on to discuss the essential role of activism by considering the strategies implemented by institutions to trigger voice when it is not initiated spontaneously. On the one hand, we diagnose a generalized failure of concerned actors to voice spontaneously around voluntary data sharing for future-oriented medical research. On the other hand, we scrutinize patient and public involvement practices made available by precision medicine initiatives as institutional attempts to increase voice and therefore as “invited activism.” We finally interrogate the limits of voice in this invited format in the context of genomics initiatives.

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Keywords

exit, voice, Albert Hirschman, healthcare activism, genetic data, precision medicine, public and patient involvement, PPI

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citations
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BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
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