Preventing "Exit," Eliciting "Voice" Patient, Participant, and Public Involvement as Invited Activism in Precision Medicine and Genomics Initiatives
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.
Chapter 2 Galasso and Geiger Preventing Exit, Eliciting Voice .pdf