Machine learning algorithms may radically improve our ability to diagnose and treat disease. For moral, legal, and scientific reasons, it is essential that doctors and patients be able to understand and explain the predictions of these models. Scalable, customisable, and ethical solutions can be achieved by working together with relevant stakeholders, including patients, data scientists, and policy makers.

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...) Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

Braun explores the use of digital twin technology in medicine with a particular emphasis on the question of how such simulations can represent a person.1 In defining some first conditions for ethically justifiable forms of representation of digital twins, he argues that digital twins do not threaten an embodied person, as long as that person retains control over their simulated representation via dynamic consent, and ideally with the option to choose both form and usage of the simulation. His thoughtful elaboration (...) provides insight into the challenges inherent in interactions between a person and their digital twin, emphasising the modes of control required to respect personal modes of freedom. This individual-centric approach to the question of representation leaves out the important ethical consideration of ensuring that all, not merely some, can be represented. Braun describes dynamic consent as a necessary mode of control, arguing that where a person is unable to give consent, ‘such simulations threaten to become illegitimate representations. They would then shift the kind of interaction from representation to illegitimate forms of prediction or surveillance and thereby could lead to infringements to individual modes of freedom.’ Consequently, the implementation of digital twin technology in healthcare would seem to exclude the most vulnerable members of society from participation in and benefiting from medical innovation, …. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also (...) identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to ask for informed consent is rejected, and it instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks providing five foundational principles for ethical medical data donation; and suggesting a draft for such a code. (shrink)

While the substantiation of “best interests” has received much attention, the question of how “the child” is conceptualised to ensure any action taken or decision made is in the particular child’s best interests has been largely neglected. In this paper, I argue that the lack of robust understanding of who “the child” is means that we continue to make many generalisations and category-based assumptions in determining the child’s best interests. In addressing the challenge of doing right by the individual child, (...) I propose a three-step approach based on a theoretical model of the child that avoids presumptions about child-typical needs and insists on an assessment of the child’s individual characteristics, needs, qualities, and circumstances, making it the only conceptualisation fully meeting the child centrism criterion required by children’s rights as determined by the United Nations Convention on the Rights of the Child. (shrink)

Adoption may be defined as ‘the legal process through which the state establishes a parental relationship, with all its attendant rights and duties, between a child and a (set of) parent(s) where there exists no previous procreative relationship’ . In adoptions from care, state intervention effectively converts an established, or nascent, adult– child relationship into ‘family’ in the legal sense. From the state’s perspective, adoption thus entails the transfer of parental responsibilities for a child in public care to a private (...) family unit, enabling the state to permanently delegate its duties towards a child to this new unit. This seemingly straightforward legal act raises deeper philosophical questions relating to such state ‘family creation’, particularly when the child’s perspective is taken. Such a child- centric approach normatively regards children as equal moral beings, who ought to be included in actions concerning them, regardless of their capacity to form and express an opinion. Accordingly, adoption from care can be described as a moral decision, aimed at doing what is in the child’s best interests. The purpose of this chapter is to explore a suspicion of a lack of child- centrism in adoption from care practice, and to illustrate how adopted children’s rights are inferior to those of their non- adopted peers. This will shed light on a practice currently lacking transparency and accountability and will increase our understanding of how we fail to treat children as equal moral individuals in decision- making that severely impacts children’s lives. (shrink)

A significant proportion of child protection cases involve care-experienced mothers, which reveals a continuous cycle of mothers who lose their children to social services after having been in state care themselves as children. While the importance of protecting children requires little explanation and forms the justificatory basis for child protection interventions, it is important to remember that care-experienced mothers were once children entrusted to the state’s care, and who arguably have been failed by the state in that their parenting opportunities (...) are significantly reduced. This paper aims to address this underexplored dilemma between protecting children and safeguarding mothering opportunities for care-experienced mothers. Appealing to the concept of solidarity, I argue that the state has an obligation to increase its compensatory efforts to secure the right of care-experienced women to not only become parents but to be able to be parents, with the aim of breaking the cycle of care experience. (shrink)