Biosociality in Rare Disease Advocacy – helpful or harmful?

Pauline McCormack, Senior Lecturer, Dept of Sociology and PEALS Research Centre, Newcastle University, UK

Rare disease advocates and patient organisations promote concepts of solidarity and biosociality to draw attention to a lack of research and effective treatments for rare disorders. By positioning rare diseases as a single disease group affecting 30m people in Europe and popularising statements like ‘rare diseases are not rare’, they have succeeded in drawing attention to the relative neglect of rare disease in the political and healthcare landscape. This has resulted in people with rare disease being represented as having unified needs and goals with homogenous views on such matters as research participation, regulation and data sharing. In contrast, my research with 52 rare disease advocates, from 16 countries found their opinions of medical research were highly variable and sometimes in opposition. This talk will discuss what the implications are for biosociality and the social licence between researchers and patients and ask if legal, ethical and regulatory approaches to rare disease research are nuanced enough to represent the heterogeneity of rare disease patients’ views.