Grappling with distance, elusiveness and fading horizons. Reflections from a normative, participatory engagement with Alzheimer futures

Located at the intersection of philosophy and STS, the field of Responsible Research and Innovation (RRI) offers an explicitly normative framework for “futuring” (imagining, exploring and shaping the future), in particular related to technological innovation. One of the central assumptions of RRI is that futuring practices can and should be democratized: engaging stakeholders in anticipatory deliberation about emerging technologies is supposed to contribute to shaping futures that are ethically and societally desirable (von Schomberg 2013; Owen et al 2012; Blok 2014). In this paper, we reflect on this assumption, starting from the practical challenges we encountered when working as RRI-inspired ethicists in a research project on biomarkers for diagnosing Alzheimer’s Disease (AD), engaging patients in an exploration of desirable futures of AD diagnostics. While never an easy feat, futuring has proven particularly complex in this case. First of all, we (and the participants) have grappled with an elusive technology – immaterial and highly hypothetical in its utility. Secondly, anticipating and deliberating futures seems particularly “slippery” as horizons of people with dementia quickly fade or are deliberately moved as close as possible to the present. This has a number of intertwined implications that we boil down to one question: How can stakeholders even begin to anticipate, let alone shape, desirable (technological) futures when elusiveness of research/technology and different personal horizons may make ‘the future’ so distant that it becomes unimaginable or even irrelevant? We argue that “responsible futuring” requires further attention to this question – methodologically, empirically and philosophically.