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Where Does Ethical Responsibility End? On Researcher Obligations After a Project Has Ended

Conference contribution
Authors Ylva Hård af Segerstad
Published in The 19th Annual Conference of the Association of Internet Researchers. Montréal, Canada, October 10-13, 2018.
Publication year 2018
Published at The Linnaeus Centre for Research on Learning, Interaction, and Mediated Communication in Contemporary Society (LinCS)
Department of Applied Information Technology (GU)
Language en
Subject categories Human Aspects of ICT

Abstract

We have recently proposed a project focusing on the needs for adolescents and young adults (AYA) diagnosed with cancer to find means for talking about death and dying, as a way of easing their stress and anxiety. In the project, we aim to develop a peer-matching app for mobile phones targeting AYA with cancer, which will allow for instant peer exchange and support. While studying how, when, with whom and about what AYA have a need to talk about death in e.g. discussion forums and Facebook groups, requires its own responsible ethical measures to be taken, this talk will focus on the question of where the ethical responsibilities of the researcher ends. In a project with a limited time frame (typically 3-5 years in a Swedish context) and budget, there is a risk that when the project time is up and the money runs out, a tool developed in the project for the benefit of a vulnerable group of users will cease to be maintained and further developed. If the tool has become what the project intended it to be, i.e. a useful and appreciated resource which meets the user group’s needs for peer support, it must be flexible and sustainable for further technological development. The project also has to ensure maintenance and further adaptation, even after the research project has ended. As ethically responsible researchers, we have to design the project with this long-term goal of sustaining what we create, as it were. We have proposed that the maintenance of the app will be sustained by minimal user fees, and further maintained by a non-profit company set up at the university for that specific purpose. What is the best practice to do this is open for discussion, and we hope that this case will spark a conversation and pooling together of experiences for protecting vulnerable user groups, such as our AYA community, from the limitations of project funding and researcher common sense.

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