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.

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, 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)

The desire to self-improve is probably as old as humanity: most of us want to be smarter, more athletic, more beautiful, or more talented. However, in the light of an ever increasing array of possibilities to enhance our capacities, clarity about the purpose and goal of such efforts becomes crucial. This is especially true when decisions are made for children, who are exposed to their parents’ plans and desires for them under a notion of increasing wellbeing. In recent years, cognitive (...) enhancement has become a popular candidate for the promotion of wellbeing; welfarists even impose a moral duty on parents to cognitively enhance their children for the sake of their wellbeing. In this article, I aim to show that welfarists are mistaken in inferring such a moral obligation from the potential benefit of cognitive enhancement. In support of this, I offer three arguments: the vagueness of wellbeing as a theoretical concept means it becomes impossible to apply in practice; the link between cognition and wellbeing is far from unequivocal; and quantification issues with regard to cognition make a duty impossible to discharge. In conclusion, I reject the welfarist approach as a justification for a parental moral obligation to cognitively enhance children. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. -/- Today, it is easy to donate (...) blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. -/- Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

In today’s world, Artificial Intelligence plays a central role in many decision-making processes. However, its use can lead to structural and epistemic injustices—especially in the context of healt...

:Discussions about the ethical permissibility of pediatric cognitive enhancement frequently revolve around arguments about welfare, and often include an appeal to the child’s right to an open future. Both proponents and opponents of cognitive enhancement claim that their respective positions best serve the interests of the child by promoting an open future. This article argues that this right to an open future argument only captures some of the risks to the welfare of children, therefore requiring a broader ethical approach. Further, (...) it suggests that a thorough moral assessment of the ends pursued is needed before concluding on the moral permissibility of cognitive enhancement in children, which ultimately hinges on the effect on the overall welfare of the child, beyond an open future. (shrink)

Within the broad field of human enhancement, pediatric cognitive neuro-enhancement appears to arouse particular interest. The increasing importance of cognitive capacities in our contemporary and cultural context appears to be the main reason for the focus on cognition as the preferred trait of enhancement, while the choice of pharmacological means is based on factors of feasibility, accessibility, and cost. While the ethical issues arising in the adult context have already been extensively covered in the literature, pediatric neuro-enhancement brings with it (...) additional ethical challenges requiring further attention. Although there are numerous important ethical considerations, the focus of this chapter is on the pursuit of normalcy as the goal in pediatric neuro-enhancement. Parental attempts to shape children are not new, and the resources available for them to do so include widespread and mostly uncontroversial tools, such as education. The increasing use of psychotropic drugs, however, reveals the significant impact of the concept of normalcy, which has resulted in a trend to medicalize what used to be considered “normal” behavior. In this context, special challenges are posed by psychiatric disorders, where the familiar treatment-enhancement distinction continues to be relied upon to justify interventions in children. Drawing on the examples of attention deficit/hyperactivity disorder and autism spectrum disorder, it will be argued that children are already being enhanced within psychiatric practice and that this is incompatible with an understanding of disability under a mixed model. (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)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, ranging (...) from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

Although the employment situation of disabled people has widely been identified as in need of improvement, progress in this area remains slow. While some progress has been made in including the physically or sensory disabled in the workplace, other types of disability have been largely neglected. This applies particularly to disabled workers in atypical employment, such as those whose workplace is the Digital Economy. In this article, we discuss the case of disabled app developers as a significant example of how (...) the current regulatory framework fails to be inclusive in its attempts to protect the rights of disabled Digital Economy workers. We identify two problems that are at the heart of this: first, a continuing failure to collect relevant and comprehensive data on disability, and second, a lack of accountability towards disabled workers in atypical employment. Consequently, we call for better data collection and argue for urgent policy changes to close the existing accountability gap. (shrink)

Despite the welfare of the child being afforded special legal and moral importance, it appears that the law is currently not objective in its application to children. There is an undeniable link between healthy child development and education, with the latter greatly impacting on mental health and general well-being. Drawing on the example of the differential treatment of gifted children in an educational context, I argue that the legal framework with regard to learning disabilities and cognitive impairments operates contrary to (...) the proclaimed goal of protecting and promoting the welfare of the child. This, I argue, constitutes unjustified discrimination, especially since there is a case to be made that highly cognitively able children could be considered disabled under a social model of disability. Whilst the group of affected children is small at present, developments in cognitive enhancement technologies mean that many more children might in the future be affected. Since the law currently fails gifted children, it will by analogy also likely fail cognitively enhanced children. (shrink)