Edit: This event has been cancelled.
Thu 19 March 14:15–15:45, Room 7, Metsätalo, Fabianinkatu 39.
Małgorzata Rajtar, associate Professor, Institute of Philosophy and Sociology at the Polish Academy of Sciences.
Health Passports and Vulnerability: The Case of Rare Diseases
Rare diseases have held a special status within health policy of the European Union (EU) since the 1990s. According to key EU legal documents on this issue, patients who suffer from a rare disease are entitled to the same good quality care as others. Due to the “low prevalence” of each rare disease and simultaneously the large total number of patients affected by them – between 27 and 36 million people in the EU – individuals who belong to this group are regarded as particularly vulnerable.
My aims in this presentation are twofold. First, I examine current notions of vulnerability prevalent in social sciences, bioethics as well as research ethics, specifically in regard to people living with rare diseases. Second, I analyze “instruments” developed by health policies that are tailored to rare diseases. By focusing on the so called “health passport”, I argue that such policies often increase the danger of paternalistic practices and may contribute to discrimination and stigmatizing.
Małgorzata Rajtar, PhD is Associate Professor and the Head of Rare Disease Social Research Center in the Institute of Philosophy & Sociology at the Polish Academy of Sciences in Warsaw (http://rdsrc.ifispan.pl/en/). She was a EURIAS Senior Fellow at the Helsinki Collegium for Advanced Studies in Finland (2018-2019) as well as an Alexander von Humboldt Postdoctoral Fellow at the Freie University in Berlin, Germany (2011-2013) among others. Since 2016 she has been conducting ethnographic research on rare metabolic diseases in the Baltic Region.