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 neuroenhancement. 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 medicalise what used to be considered ‘normal’ (childhood) behaviour. 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 (ADHD) and autism spectrum disorder (ASD), 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.
While donation schemes with dedicated regulatory frameworks have made it relatively easy to donate blood, organs or tissue, it is virtually impossible to donate one’s own medical data. The lack of appropriate framework to govern such data donation makes it practically difficult to give away one’s data, even when this would be within the current limits of the law. Arguments for facilitation of such a process have been advanced but so far have not been implemented. Discussions on the ethics of using medical data tend to take a system-centric perspective and focus on what researchers and the health service may or may not do with data that are placed within their trust. Rarely, if ever, is the question of the data subjects preferences addressed beyond practical matters of obtaining valid consent. This constitutes an important omission in the ethical debate, which this volume seeks to address.
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 (PMDD) 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.
This chapter follows the argument that personal medical data should be made available for scientific research by enabling and encouraging individuals to donate their medical records after death, provided that this can be done safely and ethically. While medical donation schemes with dedicated regulatory and ethical frameworks for blood, organ or tissue donations are already in place, no such ethical guidance currently exists with regard to personal medical data. In addressing this gap, this chapter presents the first ethical code for posthumous medical data donation (PMDD). It is based on five foundational principles and seeks to inform and guide the implementation of an effective and ethical PMDD scheme by addressing the key risks associated with the utilisation of personal health data for the promotion of the common good.