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Bioethics in Big Data: Developing A Contextualized Informed Consent Framework for Ambient Assisted Living Technologies

Societies in Western Europe are ageing dramatically, leading to increasing incidence of dementia. It is desirable for persons with dementia to remain living in the community as long as possible. Assistive care robots have been developed to support persons with dementia and their carers. These robots employ Big Data technologies able to monitor a person’s activities and mental state and provide activities and analyse this information in a complex manner. However, potential users have concerns about using these robots and are worried especially about privacy. My project will involve an analysis of the privacy related ethical challenges of this technology and make suggestions for how best to address those challenges. The project is part of a larger research project (H2020 MARIO) that aims to develop an ethical and effective assistive care robot. My part of the project will focus on developing an understanding of privacy concerns for this target group. I will begin with an analysis of the existing literature on privacy in robotics and other monitoring technologies for the elderly and persons with dementia. I will then investigate with regard to the specific robot where exactly in the data processing process privacy concerns might arise. I will consider what data is collected, how it is processed, and what stakeholders have what access needs and ability to interact with the data. I will develop a consent framework for privacy issues for that robot that is adapted to the needs of persons with dementia and their carers.