Rare disease patient organisations, biobanks, and biomedical innovation

Since the 1990s, a growing number of rare disease patient organisations have set up their own biobanks and registries to serve as resources for laboratory and clinical researchers. As a number of studies have shown, patient organisations’ control of access to these resources enables them to play an active role in promoting, coordinating and directing research into their particular disease, with the professed aim of ensuring that such research best serves the interests and concerns of their members. The way that patient organisations leverage their biobanks and registries does not end with research, however. They also commonly seek to control the products of that research, through ownership of intellectual property and commercialisation agreements with researchers and manufacturers, among other means. Patient organisations are thus establishing themselves as increasingly influential actors and partners, not just in research, but in the biomedical innovation system more generally. This raises far reaching questions about how disease organisations mediate between their membership on the one hand and the worlds of medical care and biomedical innovation on the other. How does their involvement in the biomedical innovation system affect the forms of solidarity they build, both among their membership and between rare disease organisations? And how, in turn, does their action on behalf of highly specific patient constituencies affect the dynamics, delivery and distribution of new biomedical goods? This PhD project will examine these questions, drawing on in-depth qualitative and, if appropriate, quantitative research into selected rare disease organisations and their organisation and management of member biobanks and registries.