Dans le cadre de ses midis de l’éthique, le CRÉ reçoit Karin Jongsma (University Medical Center Utrecht), qui offrira une présentation intitulée « One for all, all for one? – On the aggregation of individual interests into collective claims within patient organization of dementia and autism. »
The inclusion of patients’ perspectives in health care policy-making, agenda setting and research practices is increasingly practiced by patient organizations (POs). The underlying presumption is that POs aggregate their members’ perspectives and represent the interests of a collective. Claims for representation are however not self-validating, and need normative justification. Organizational structures of POs are of particular interest in this respect, given the fact that they influence which voices are included, how is mediated between subgroups and how collective standpoints are finally formulated. These methods of interest aggregation carry normative weight, as it is an implicit or explicit decision about whose interests are recognized.
In this presentation I will analyze methods of interest aggregation within POs by drawing on empirical material collected in my post-doc project in Germany. The cases of autism and dementia are illustrative, because the diversity of members (affected/non-affected members), range of affectedness (‘high function’/’low functioning’) and the particularities of the conditions (difficulties expressing oneself/following democratic methods) pose challenges for traditional democratic ideas of interest aggregation and collectivity.