BackgroundGuidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.ObjectiveOur objective was to scrutinize patient and public involvement (PPI) by a pan‐European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research.Setting, participants and analysisTwo public events, one in the UK and one in Denmark were conducted as part of the consortium's on‐going PPI activities in 2014 and 2015. Sixty‐six individuals submitted written comments on the consortium's research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.ResultsThe themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co‐occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on‐going.DiscussionThis case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue.

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Medical, psychological, educational and social interventions to modify the behavior of autistic people are only justified if they confer benefit on those people. However, it is not clear how "benefit" should be understood. Most such interventions are justified by referring to the prospect that they will effect lasting improvements in the well-being and happiness of autistic people, so they can lead good lives. What does a good life for an autistic person consist in? Can we assume that his or her well-being is substantively the same as the well-being of non-autistic individuals? In this paper we argue that, as it stands, the current approach to the study of well-being is for the most part unable to answer these questions. In particular, much effort is needed in order to improve the epistemology of well-being, especially so if we wish this epistemology to be 'autism-sensitive.' Towards the end of the paper, we sketch a new, autism-sensitive approach and apply it in order to begin answering our initial questions.

In this paper, we discuss the development of robot use cases in an elderly care facility in the context of exploring the method of Integrative Social Robotics (ISR) when used on top of a user-centered design approach. Integrative Social Robotics is a new proposal for how to generate responsible, i.e. culturally and ethically sustainable, social robotics applications. Starting point for the discussion are the five principles that characterize an ISR approach, which are discussed in application to the three use cases for robot support in a Danish elderly care facility developed within the smooth project. The discussion by an interdisciplinary design team explores what attention to the five principles of ISR can offer for use case development. We report on the consequences of this short-time exposure to the basic ideas of ISR for use case development and discuss the value of approaching robot development from an ISR perspective.

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