Donate Yourself: An AR trail exploring the future of organ, tissue and body data donation

Abstract

This article explores how communication and interaction design were used in the augmented reality experience, Donate Yourself. It aims to demystify some of the ethical and personal concerns around the donation of organs, tissue and body data for scientific and medical research. The research finds different modes of provoking thought around a central question: can augmented reality be used to open debates on who has access to our biological and digital traces beyond death? Taking into account how COVID-19 has made the public deeply reconsider their biological and data bodies, the paper documents and contextualizes the making of Donate Yourself, which was created in collaboration with interactive design collective body>data>space and scientists from the Human Cell Atlas project (HCA). In doing so, it explores the contested histories of human tissue in research and contemporizes these relations by looking at the way HCA members use and care for human tissue and data in their work. A range of methods that were used to capture diverse public attitudes and ethical concerns about donation using participatory approaches included: the co-creation of design probes with HCA scientists, online workshops, qualitative interviews, a documentation zine and public maker jam. These methodological lenses, and the data they produce, were used to construct a non-linear narrative and digital bricolage that is experienced as a hybrid public walking tour. Five themes were generated for the augmented reality experiences: care, trust, immortal, consent, future. This triangulation of science, technology and the arts was materialized in a webAR walking trail that ran during November 2021, which was accessed by the public via QR codes as part of the larger One Cell At A Time online exhibition, funded by the Wellcome Trust.