Situated Responsibilities

Ethical Research and Care Practices Among Patient Communities in Italy

Abstract

In the last two decades, there has been growing discourse – in and around institutions – on specific aspects of scientific research and technological innovation, particularly on the way they tend to be conducted «secludedly», without the possibility of scrutiny or intervention by people outside institutions themselves. The so-called «Responsible Research and Innovation» (RRI) approach aims to rewrite the relationship between scientists and their wider social context, focusing of conducting research «responsibly», which would ideally mean more attuned to societal needs and desires. This contribution tries to discuss what this idea of «responsible research» might concretely mean, and, drawing from empirical research on two patient and caregiver organizations in Italy, aims to show what happens when these ideas of ethical and responsible research are reappropriated by subjects usually excluded from these processes – with the explicit objective of tailoring research and innovation to the concrete need of patient-caregiver communities.