• ethics

We note a range of interesting and challenging points which take forward the discourse around the ethics of sharing patient data. Of most note are criticisms of our jury recruitment and methods; questioning how we can engender trust and support from the wider, uninformed public when we only have the view of a small informed public; asking what work needs to be done to ethically transfer data from a clinical care setting to that of research; suggesting that dynamic consent with opt-outs could be an avenue for allowing patients more control over the use of their medical data for research; and asking how we bridge from ‘is’ (a description of public views) to ‘ought’ (what should policy be?).

The first criticisms to be addressed focus on the recruitment and methods of our jury, raised by Carter.1 She suggests that the selection of participants, using a population distribution of responses to a data-sharing question, resulted in a jury too positively oriented to data sharing at the outset. Further, she suggests that we counted individual votes rather than allowing the jury to come to a collective position, that jurors were not asked to prioritise the common good, that we present a lack of data from the jury’s deliberations, and as a result, there is a difficulty with evaluating the reasoning and authenticity of deliberation. Regarding recruitment of our jury, our stated aim, which we acknowledge is not shared by all juries, was to achieve a sample which broadly matched what we would expect if …