Monthly Archives: January 2021

STS Helsinki Seminar – Małgorzata Rajtar, 21.01, 16:15

We are happy to continue our seminar series in in 2021 with a talk by Małgorzata Rajtar:

21 January, 16:15–17:45 (EET)

Małgorzata Rajtar, Prof. IFiS/Associate Professor, Institute of Philosophy & Sociology, Polish Academy of Sciences/Rare Disease Social Research Center


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 2000. 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.

Drawing from ethnographic fieldwork and insights from two sets of scholarship: (1) bioethical and health policy scholarship on vulnerability, and (2) social science literature on materialities, in this presentation I analyze health policy instruments that are tailored to rare diseases. Specifically, I will focus on so called healthcare passports and alert cards that are aimed at facilitating access to treatment for patients with a rare disease. As rare disease materialities draw biomedical attention to conditions patients live with, these documents may fuel paternalistic and biomedically-biased practices and impinge on patient privacy.

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Topic: STS Helsinki Seminar – Małgorzata Rajtar
Time: Jan 21, 2021 04:15 PM Helsinki

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