These are my notes from my talk at Digital Culture and the Limits of Computation.
Fantastic workshop at the Foundation Brocher ‘Citizens’ use of digital media to connect with healthcare: exploring the socio-ethical and regulatory implications’ – organized by Alan Peterson, Claire Tanner and team.
We spent three days hearing about different perspectives on digital health – from online medical testing; global trades in embryos and stem cells; statistical tests, norms and calculators; citizen health databases; health records to hacking health. A framing question might be that of what connects and disconnects – for example connection through some nodes means disconnection through others – or more philosophically what might be the constitutive disconnections of connectivity.
For me one of the questions that came through in relation to stem cells was that of the importance of science communication and its role. In a context in which press releases and PR actors are significant and in which there is an imperative to make optimistic claims about direct benefits of research, media cultures of optimism built up over decades can create a vacuum that enables the conditions in which unproven treatments become popular.
Another key theme was about trust and legitimacy – what are the loci, nodes and conditions for creating trust or legitimacy? In a broader context of uncertainty, do experience and feelings about experience and testimony become ever more significant and do social media platforms exacerbate and intensify this?
The presentations at the workshop included:
• Sally Wyatt: The Internet as innovative healthcare technology
• Klaus Hoeyer: The data politics of digitalized healthcare
• Kate O’Riordan: Disconnection in the culture of connectivity: health records, digital health promotion and patient care
• John-Arne Skolbekken: Meaningless numbers? Reflections on the construction of individual risks
• Caroline Sanders: Dissolving and creating boundaries in healthcare via the collection and use of digital patient data on symptoms and experience
• Leigh Turner: U.S. clinics using direct-to-consumer online advertising to promote unapproved stem cell interventions: ethical, legal, and scientific concerns
• Alan Petersen, Claire Tanner and Megan Munsie: What is ‘trust’ in digitally mediated healthcare?: exploring the experiences of patients and carers who contemplate stem cell treatments
• Andrea Whittaker: Digital reproduction
• Roberta Raffaetà & Adiano Jannacos: Hacking Health Movement: A win-win game?