Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism.

BACKGROUND: Guidelines 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. OBJECTIVE: Our 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 ANALYSIS: Two 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. RESULTS: The 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. DISCUSSION: This 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.

'Autism and the good life': a new approach to the study of well-being.

Medical, psychological, educational and social interventions to modify the behaviour 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.

Life support and euthanasia, a perspective on Shaw's new perspective.

It has recently been suggested by Shaw (2007) that the distinction between voluntary active euthanasia, such as giving a patient a lethal overdose with the intention of ending that patient's life, and voluntary passive euthanasia, such as removing a patient from a ventilator, is much less obvious than is commonly acknowledged in the literature. This is argued by suggesting a new perspective that more accurately reflects the moral features of end-of-life situations. The argument is simply that if we consider the body of a mentally competent patient who wants to die, a kind of 'unwarranted' life support, then the distinction collapses. We argue that all Shaw has provided is a perspective that makes the conclusion that there is little distinction between voluntary active euthanasia and voluntary passive euthanasia only seemingly more palatable. In doing so he has yet to convince us that this perspective is superior to other perspectives and thus more accurately reflects the moral features of the situations pertaining to this issue.