Rare diseases as a real time policy laboratory: Citizen engagement and public health
Talk by Rob Hagendijk at the Joint Research Centre (15 September 2016)
How to develop citizen engagement with respect to rare diseases? Why is that of broader relevance to society? How can science and technology studies, the academic field in which new ideas about citizen science and scientific citizenship are developed and tested help to answer these questions?
A rare disease is a medical condition that affects 5 out of 10.000 people. In Europe almost 30 million people suffer from rare diseases. Currently more than 7000 medical conditions are recognized as ‘rare’. For many of these the number of patients is very low, which explains that no drugs for these rare diseases are being developed (the so-called orphan drug problem). Yet there is hope because of the revolutionary advances in the biosciences and pharmaceutics. EU policies to deal with the situation are well underway. The situation is urgent as the suffering is extreme and 75% of the diseases concern new born babies of which 30% dies less than six years old. The others and their families continue for a life overburdened by suffering and concern. What are the problems and how may reflexive public engagement initiatives help to promote adequate solutions?
To contribute to the analysis of problems of rare diseases and orphan drugs is important enough in itself, yet is relevance stretches far beyond that. Cynical as it may sound these problems offer us a ‘lens’ allowing us to grasp how the global revolution in the biosciences and pharmaceutics raise unsettling but urgent questions about the future sustainability of public health for all citizens.
The presentation will draw on coproduction analysis as proposed by Sheila Jasanoff and developed in the volume we published last year ‘Genetics and Society : Science and Democracy : Making Knowledge and Making Power in the Biosciences and Beyond. (Hilgartner, Miller and Hagendijk, Routledge 2015)
About the Speaker:
Rob Hagendijk is Dean Emeritus of the International School for Humanities and Social Sciences of the Universiteit van Amsterdam (UvA), The Netherlands. After his formal retirement from the UvA in 2014 he has continued to work in the university’s Department of Political Science as a researcher specialized in studies of science, technology and society (STS), a field in which he has been active since the early 1970s and in which he obtained his PhD.
Social and political theory and philosophy of science have always been an important feature in his work alongside empirical work in public relations of science, science and public controversy, science and technology policy, science and technology for developing countries, international relations and European innovation policies. He was involved in the EU funded STAGE project (Science, Technology and Governance in Europe) and the RESIST project (Researching Inequality through Science and Technology).
His current work deals with the development of European policies with respect to rare diseases and orphan drugs policies, mobilizing the patients voices and establishing European reference networks for treatment and research.
He is one of the founders of the Department for Science and Technology Dynamics (1982) at the University of Amsterdam as well as the Netherlands Graduate School for Modern Culture (WTMC, 1987). From 1996–2000 he was president of the European Association for Science and Technology Studies (EASST). From the start in 2002 he has been a Council Member of the Science and Democracy Network (SDN).
Contro Corrente is a series of seminars with renowned scholars and practitioners of science and technology studies, aiming at raising awareness of science and technology studies and how these types of reflexive activities can help with scientific practice at the Joint Research Centre.
