Anticipating Alzheimer’s futures: The promise of biomarkers vs current ways and values of anticipation among patients and their informal carers

Karen Dam Nielsen

Research output: Contribution to conferenceAbstractAcademic

Abstract

Emergent biomarkers for Alzheimer’s disease (AD) aimed at early diagnosis and prognosis are, potentially, “anticipatory technologies” in that they are expected to provide clinicians, patients and their family with information about ‘what is to come’. As such, biomarkers are aimed at filling a gap in current AD care where little or nothing can be said about how AD will progress for the individual. Still, or partly as a consequence of this gap, patients and their informal carers employ a number of strategies for relating to and managing the future: to foresee and prepare for it - and/or to bracket and park it. In this presentation, I unpack some of these strategies based on insights from a participatory RRI-study that in itself can be described as an anticipatory technology: exploring, shaping and sharing patients’ and informal carers’ expectations to emerging diagnostic and prognostic tools in AD. A few insights stand out as particularly relevant for the promise and possible implications of emergent AD biomarkers: the power and powerlessness of (getting) an AD diagnosis, the ambivalence towards knowing the future, and the multiple meanings and practices of preparing. Supporting a practice-based, value-oriented and constructive approach to technology assessment (e.g. Keulartz et al 2004; Kiran et al 2015; Boenink et al 2016), I discuss how these insights can be translated into (ethical) recommendations for AD biomarker research.
Original languageEnglish
Publication statusPublished - 2018
Event10th Annual S.NET Meeting 2018: Anticipatory Technologies: Data and Disorientation - University of Maastricht, Maastricht, Netherlands
Duration: 25 Jun 201827 Jun 2018
Conference number: 10

Conference

Conference10th Annual S.NET Meeting 2018
CountryNetherlands
CityMaastricht
Period25/06/1827/06/18

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