'Stem geven' en 'publiek maken'. Wat patiëntenverenigingen ons kunnen leren over democratie

Abstract

Abstract: Giving voice and making public. What patient organisations may teach us about democracy. This paper offers a pragmatist interpretation of the role of patient organisations in public debates about medical-ethical issues. Analysing the role of Parkinson disease societies in the United Kingdom and the Netherlands in recent stemcell debates, we argue that interpretations based on models of democracy that focus on deliberation and inclusion fail to single out the exclusive role of patient organisations. These models welcome patient organisations in democracy because of their role in representing and giving voice to people who are at danger of being excluded from the democratic processes. However, under this interpretation, because their views parallel those of medical professionals and researchers, patient organisations become easily subject to the suspicion that they are just an extension of the professional medical world. In the pragmatist interpretation, the role of patient organisation in public debates about medical-ethical issues is to present a public consisting - in Dewey’s words - of 'all those who are affected by the indirect consequences of transactions to the extent that it is deemed necessary to have those consequences systematically cared for'. To fulfill this role, patient organisations use a variety of techniques not available to the medical professionals. These techniques are analysed along lines set out by Latour in his seminal work in science studies.