Innovating Biomedical Markets for Social Justice: Potentials and Limits of Technical Democracy to Reduce Inequality

• In Event: Speculation and Innovation in Digital Health - I

Abstract

Our paper is part of a research project primarily investigating strategies for the innovation of healthcare markets to the pursuit of social justice and of the public good (misfires.ucd.it).
This paper juxtaposes technological innovation in two different domains - biomedicine and digital platforms - by scrutinizing whether the latter could meet the concerns about the first in terms of equity: we interrogate the extent to which patient-driven digital platforms could be classified as technologies of democracy (Laurent 2011) and facilitate a ‘participatory turn’ in healthcare.
On the one hand, by grounding ourselves on empirical research on the impact of precision medicine for social and health equity in US and UK (Galasso 2018, PhD Dissertation), we argue that biomedical innovations – unless accompanied by appropriate socio-political reforms ensuring benefits for the underserved – risk exacerbating existing inequalities by only benefitting the better-off.
On the other hand, we consider the unprecedented opportunities offered by digital platforms to enhance public participation and activism in healthcare, as expressed through the ‘ePatient’ movement.
We engage with the STS concept of ‘technical democracy’ (Callon et al. 2001), by scrutinizing online initiatives as ‘hybrid forums’: we argue they could foster the equitable distribution of biomedical benefits (Sen 1999), but we also recognize that they risk being coopted by dominant market actors and drown out voices of the digitally less enabled.
We conclude by laying the ground for casting comparative analyses on the limits and potentials of different forms of democracy for participatory innovation in biomedical markets (eg: spontaneous VS institutionalized).

Authors

• Ilaria Galasso, University College Dublin

• Susi Geiger, University College Dublin