Authors:Tineke Broer (University of Edinburgh)
Emily Ross (University of Edinburgh)
Choon Key Chekar (University of Leeds)
Sarah Cunningham-Burley (University of Edinburgh)
Paper short abstract:
Drawing on publicly available data such as blogs and forums where people share their experiences and worries relating to cancer diagnostics, treatments, and research participation, we analyse the way developments in genomics are shaping public discourse and instantiations of cancer patienthood.
Paper long abstract:
Cancer diagnostics and treatment are dynamic areas both within research and practice, with new sequencing techniques aiming to target genomic alterations in individual tumours, thereby personalising medicine to individual patients. Where this may have tremendous potential for at least some groups of patients, others might not benefit as such from these new developments. Drawing on publicly available data such as blogs, forums and (auto)biographies where people share their experiences and worries relating to cancer diagnostics, treatments, and research participation, in this paper we aim to analyse the way developments in cancer genomics are shaping public discourse and instantiations of cancer- what we term 'public patienthood'.
Our analysis focuses on what public patienthood comes to mean in a post-genomics era, and in particular on the way in which cancer patienthood is constituted through blogs and forums on the internet. It raises questions such as: how are hopes and expectations constructed in this regulatory, ethically and scientifically complex field? How are identities of patients and families as well as identities of cancer shaped through new understandings and techniques in science? And how does this play out in a public place such as the internet, which has already been shown to shape how patienthood is constructed, experienced and expressed? This analysis will link in key ways to what it means to be human in the 21st century, including how genomic presents and futures shape our ideas of (public) humanity in the context of health, disease and patienthood.
What does it mean to be Human in the 21st Century?