One for All, All for One?

A workshop to address ethical, sociological and normative-political questions concerning the assumption that patient organizations (POs) represent a larger group of affected persons and the justification of advocacy by others.

On October 20st 2016 the Department of Medical Ethics and History of Medicine of the University Medical Centre Göttingen and the Ben-Gurion University of the Negev organize a one-day workshop with international experts. Invited speakers: Hester van de Bovenkamp (Erasmus University Rotterdam), Aviad Raz (Ben-Gurion University of the Negev), Sagit Mor (University of Haifa), Ronen Gil (The Autistic Community of Israe)), Katrin Grüber (Institutes Mensch, Ethik und Wissenschaft)

Patient representation, disability advocacy and health social movements have increasingly been included in decision-making processes over the last decades. The idea that people with disabilities should have a say in health care and health policy is widely accepted and legitimated, because they are the ones affected by such policies and consuming such care. While in most of the literature it is stated that this democratisation process of health care has not expanded enough, others have been sceptic about the desirability of further democratisation of health care. Proponents and opponents of ‘more power to people with disabilities’ continue to debate the evidence for inclusion of patient and disability advocacy organizations in decision-making and how ‘lay’-perspectives should be valued. So far, only little attention has been payed to the assumption that such organizations represent a collective. Important questions are therefore still open, such as how these organizations come to their knowledge and standpoints, and whom they actually represent.

In this workshop we will address ethical, sociological and normative-political questions concerning the assumption that patient organizations (POs) represent a larger group of affected persons and the justification of advocacy by others: Is it important that POs form their standpoints democratically? And should advocacy always be self-advocacy? What does that mean for persons that have conditions that may limit their capacity to represent themselves as well as to self-organise?

Registration and contact

Dr. Karin Jongsma
Tel.: 0551-39-9008
Mail: Karin Jongsma

Attendance is free, but you need to have been registered. There is no compensation for travel and accommodation.