Paper short abstract:

What does "being responsible" mean in the context of bottom-up initiatives of research and technological innovation in healthcare? This contribution aims to explore articulations of the concept of moral responsibility among communities of patients and caregivers.

Paper long abstract:

In recent years, the paradigm of "Responsible Research and Innovation" has taken root as a way of conducting scientific research and facilitating innovation in technology and services through the direct involvement of citizens or specific communities of end-users. RRI has become the framework of choice for projects that aim to foster the participation of lay people throughout processes of research and development. Especially in healthcare, RRI means paying attention to specific problems of specific people, and developing specific solutions that may apply to a relatively small group of patients.

But what happens if the idea of doing research and innovation "responsibly" is appropriated by entities that operate outside the boundaries of healthcare institutions, both public and private? This paper explores articulations of responsibility in three such entities, investigating the meaning of "being responsible" that emerges from representations, narratives, and practices of research and innovation in these contexts. The focus will be twofold. On the one hand, on responsibility as attention to the peculiar needs of patients and caregivers: this entails the shifting of priorities and perspectives from those of institutions and markets to those of communities and individuals. On the other hand, on responsibility as care: through the involvement of different groups of stakeholders in research and innovation, these processes cease to be just a way to find a solution to a problem, and become a way for these communities to take care of each other, and create relationships of solidarity and mutual aid.