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’ to ‘ought’. 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 …. (shrink)

Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2017 and April 2018, 69 donors and 147 recipients, recruited at the Portuguese Public Bank of Gametes, participated in this cross-sectional study. Position towards anonymity was assessed through an open-ended question in a (...) self-report questionnaire, which was subject to content analysis. Preference for an anonymous donation regime was mentioned by 82.6% of donors and 89.8% of recipients; and all those with children. Instead of the rights-based reasoning used by the Constitutional Court, donors highlighted concerns over future relationships and recipients focused on socioethical values linked with the safeguard of safety, privacy and confidentiality. The remaining participants advocated the choice between anonymity or non-anonymity, invoking respect for their autonomy. The complex, diverse ethical views and reasoning of donors and recipients expand a traditionally dichotomous discussion. Their perspectives challenge the transition towards non-anonymity and international guidelines, raising awareness to the need for their involvement in the design of policies to enable choice according to their values and preferences, and of psychosocial counselling responsive to their socioethical concerns and sensitive to their parental status. Empirical frameworks complement rights-based approaches to uphold justice, fairness and equal respect, and to incorporate utility, beneficence and non-maleficence in policymaking and healthcare in the transition towards non-anonymity. (shrink)