The use of Ritalin and other stimulant drug treatments for attention-deficit hyperactivity disorder (ADHD) raises distinctive moral dilemmas for parents; these moral dilemmas have not been adequately addressed in the bioethics literature. This paper draws upon data from a qualitative empirical study to investigate parents' use of the moral ideal of authenticity as part of their narrative justifications for dosing decisions and actions. I show that therapeutic decisions and actions are embedded in valued cultural ideals about masculinity, self-actualization and success, (...) as well as in moral conceptions of authenticity and personal freedom. I argue that this investigation of parents' moral justifications and dosing dilemmas raises questions about the validity of authenticity as a transcendent moral principle. Moreover, this study demonstrates that in order to be relevant, bioethical analysis of neurocognitive enhancement must engage with ground-up studies of moral principles and decision-making in context. (shrink)

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose “design bioethics” as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital tools can engender situated engagement (...) with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by “design bioethics” could offer unique insights into new and familiar normative and empirical issues in the field. (shrink)

In this article, I examine children's reported experiences with stimulant drug treatments for attention deficit hyperactivity disorder in light of bioethical arguments about the potential threats of psychotropic drugs to authenticity and moral agency. Drawing on a study that involved over 150 families in the USA and the UK, I show that children are able to report threats to authenticity, but that the majority of children are not concerned with such threats. On balance, children report that stimulants improve their capacity (...) for moral agency, and they associate this capacity with an ability to meet normative expectations. I argue that although under certain conditions stimulant drug treatment may increase the risk of a threat to authenticity, there are ways to minimise this risk and to maximise the benefits of stimulant drug treatment. Medical professionals in particular should help children to flourish with stimulant drug treatments, in good and in bad conditions. (shrink)

Early intervention aims to identify children or families at risk of poor health, and take preventative measures at an early stage, when intervention is more likely to succeed. EI is concerned with the just distribution of “life chances,” so that all children are given fair opportunity to realize their potential and lead a good life; EI policy design, therefore, invokes ethical questions about the balance of responsibilities between the state, society, and individuals in addressing inequalities. We analyze a corpus of (...) EI policy guidance to investigate explicit and implicit ethical arguments about who should be held morally responsible for safeguarding child health and well-being. We examine the implications of these claims and explore what it would mean to put the proposed policies into practice. We conclude with some remarks about the useful role that philosophical analysis can play in EI policy development. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms (...) enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)

Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...) this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests. (shrink)

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents (...) in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/protective highlights counter normative consequences and opposes the use enhancers. The Individual/proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern. (shrink)

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents (...) in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/Protective highlights counter normative consequences and opposes the use enhancers. The Individual/Proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern. (shrink)

Few empirical studies in the UK have examined the complex social patterns and values behind quantitative estimates of the prevalence of pharmacological cognitive enhancement. We conducted a qualitative investigation of the social dynamics and moral attitudes that shape PCE practices among university students in two major metropolitan areas in the UK. Our thematic analysis of eight focus groups suggests a moral ecology that operates within the social infrastructure of the university. We find that PCE resilience among UK university students is (...) mediated by normative and cultural judgments disfavoring competitiveness and prescription drug taking. PCE risk can be augmented by social factors such as soft peer pressure and normalization of enhancement within social and institutional networks. We suggest that moral ecological dynamics should be viewed as key mechanisms of PCE risk and resilience in universities. Effective PCE governance within universities should therefore attend to developing further understanding of the moral ecologies of PCE. (shrink)

The VOICES study involved at least one radical move in the decades-old debates about attention deficit hyperactivity disorder diagnosis and stimulant drug treatments: to systematically investigate young people's perspectives and experiences so that these could be included as evidence in social, ethical and policy deliberations about the benefits and risks of these interventions. The findings reported in this article were both surprising and unsurprising to us as researchers. We were surprised at the consistency of children's positive responses to stimulant medication, (...) and at the robustness of the experience of increased capacity for moral agency with medication. We were unsurprised at the insights many young people have into their own behaviours and that of others.I am hopeful that the perspectives of children reported in this article will inspire a fresh public conversation about the ethics of stimulant drug treatments, as well as further research with children. In order to believe that children's perspectives add something new and valuable to the social discourse, one must first view children as capable of reliably reporting their own experiences as part of a well-designed research study. It seems that Steven Rose does …. (shrink)

Volume 19, Issue 8, August 2019, Page 49-51.

Utilising science and technology to maximize human performance is often an essential feature of military activity. This can often be focused on mission success rather than just the welfare of the individuals involved. This tension has the potential to threaten the autonomy of soldiers and military physicians around the taking or administering of enhancement neurotechnologies. The Hybrid Framework was proposed by academic researchers working in the U.S. context and comprises “rules” for military neuroenhancement. Integrating traditional bioethical perspectives with the unique (...) requirements of the military environment, it has been referenced by military/government agencies tasked with writing official ethical frameworks. Our two-part investigation explored the ethical dimensions of military neuroenhancements with military officers – those most likely to be making decisions in this area in the future. In three workshops, structured around the Hybrid Framework, we explored what they thought about the ethical issues of enhancement neurotechnologies. From these findings, we conducted a survey to probe the extent of rule endorsement. Results show high levels of endorsement for a warfighter’s decision-making autonomy, but lower support for the view that enhanced warfighters would pose a danger to society after service. By examining the endorsement of concrete decision-making guidelines, we provide an overview of how military officers might, in practice, resolve tensions between competing values or higher-level principles. Our results suggest that the military context demands a recontextualisation of the relationship between military and civilian ethics. (shrink)

Eighteen months ago, I left a permanent professorship in a generously interdisciplinary department of sociology and took an impermanent, lower-paying job at a university where I had to apply to something called the “Committee on Distinction” to retain the title of “Professor.” Some people say, “That's what happens when Oxford calls.” But it wasn't just that. It was the opportunity to engage in a groundbreaking experiment: to embed and integrate ethics within the Oxford Department of Psychiatry and Neuroscience. It's a (...) dream job, for which I was willing to cross the disciplinary line into the medical sciences. In the United Kingdom, many bioethicists still work in departments outside science and medicine; similarly, those of us who work on neuroethics and psychiatric ethics tend to inhabit departments of philosophy, law, or sociology. I can report already that interdisciplinarity from this side feels and looks different. (shrink)