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)

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)

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)

Cognitive enhancement (CE) covers a broad spectrum of methods, including behavioral techniques, nootropic drugs, and neuromodulation interventions. However, research on their use in children has almost exclusively been carried out in high-income countries with limited understanding of how experts working with children view their use in low- and middle- income countries (LMICs). This study examines perceptions on cognitive enhancement, their techniques, neuroethical issues about their use from an LMICs perspective.Seven Indian experts were purposively sampled for their expertise in bioethics, child (...) development and child education. In-depth interviews were conducted using a semi-structured topic guide to examine (1) understanding of CE, (2) which approaches were viewed as cognitive enhancers, (3) attitudes toward different CE techniques and (4) neuroethical issues related to CE use within the Indian context. All interviews were audio recorded and transcribed before thematic analysis.Findings indicate Indian experts view cognitive enhancement as a holistic positive impact on overall functioning and well-being, rather than improvement in specific cognitive abilities. Exogenous agents, and neuromodulation were viewed with skepticism, whereas behavioral approaches were viewed more favorably. Neuroethical concerns included equitable access to CE, limited scientific evidence and over-reliance on technology to address societal problems. This highlights the need for more contextually relevant neuroethics research in LMICs. (shrink)

Violence risk assessment tools are increasingly used within criminal justice and forensic psychiatry, however there is little relevant, reliable and unbiased data regarding their predictive accuracy. We argue that such data are needed to (i) prevent excessive reliance on risk assessment scores, (ii) allow matching of different risk assessment tools to different contexts of application, (iii) protect against problematic forms of discrimination and stigmatisation, and (iv) ensure that contentious demographic variables are not prematurely removed from risk assessment tools.

Abstract:In this article, we present a pragmatic approach to neuroethics, referring back to John Dewey and his articulation of the “common good” and its discovery through systematic methods. Pragmatic neuroethics bridges philosophy and social sciences and, at a very basic level, considers that ethics is not dissociable from lived experiences and everyday moral choices. We reflect on the integration between empirical methods and normative questions, using as our platform recent bioethical and neuropsychological research into moral cognition, action, and experience. Finally, (...) we present the protocol of a study concerning teenagers’ morality in everyday life, discussing our epistemological choices as an example of a pragmatic approach in empirical ethics. We hope that this article conveys that even though the scope of neuroethics is broad, it is important not to move too far from the real life encounters that give rise to moral questions in the first place. (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)

The concept of mental integrity is currently a significant topic in discussions concerning the regulation of neurotechnologies. Technologies such as deep brain stimulation and brain-computer interfaces are believed to pose a unique threat to mental integrity, and some authors have advocated for a legal right to protect it. Despite this, there remains uncertainty about what mental integrity entails and why it is important. Various interpretations of the concept have been proposed, but the literature on the subject is inconclusive. Here we (...) consider a number of possible interpretations and argue that the most plausible one concerns neurotechnologies that bypass one’s reasoning capacities, and do so specifically in ways that reliably lead to alienation from one’s mental states. This narrows the scope of what constitutes a threat to mental integrity and offers a more precise role for the concept to play in the ethical evaluation of neurotechnologies. (shrink)

Background Over the last decades, the neurosciences, behavioral sciences, and the social sciences have all seen a rapid development of innovative research methods. The field of bioethics, however, has trailed behind in methodological innovation. Despite the so-called “empirical turn” in bioethics, research methodology for project development, data collection and analysis, and dissemination has remained largely restricted to surveys, interviews, and research papers. We have previously argued for a “Design Bioethics” approach to empirical bioethics methodology, which develops purpose-built methods for investigation (...) of bioethical concerns. In this paper we compare a research tool created using a design bioethics approach to a “methods-as-usual” approach in empirical bioethics.Methods Our study compared dimensions of engagement with a digital game we created, called “Tracing Tomorrow,” to a standard vignette survey. The two tools investigated the same subject matter, digital phenotyping for mental health, in a sample of 301 UK adolescents.Results Participants who played the game reported a greater sense of presence, emotional engagement, cognitive absorption, and mental health ethics insight, compared to participants who completed the vignette survey. Perceived authenticity and curiosity/motivation to learn more was equivalent for both methods.Conclusion The results of this study highlights the importance of purpose-built methodology for empirical bioethics research. (shrink)

A growing number of technologies are currently being developed to improve and distribute thinking and decision-making. Rapid progress in brain-to-brain interfacing and swarming technologies promises to transform how we think about collective and collaborative cognitive tasks across domains, ranging from research to entertainment, and from therapeutics to military applications. As these tools continue to improve, we are prompted to monitor how they may affect our society on a broader level, but also how they may reshape our fundamental understanding of agency, (...) responsibility, and other key concepts of our moral landscape.In this paper we take a closer look at this class of technologies – Technologies for Collective Minds – to see not only how their implementation may react with commonly held moral values, but also how they challenge our underlying concepts of what constitutes collective or individual agency. We argue that prominent contemporary frameworks for understanding collective agency and responsibility are insufficient in terms of accurately describing the relationships enabled by Technologies for Collective Minds, and that they therefore risk obstructing ethical analysis of the implementation of these technologies in society. We propose a more multidimensional approach to better understand this set of technologies, and to facilitate future research on the ethics of Technologies for Collective Minds. (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)

Increasingly, national governments across the globe are prioritizing investments in neuroscience. Currently, seven active or in-development national-level brain research initiatives exist, spanning four continents. Engaging with the underlying values and ethical concerns that drive brain research across cultural and continental divides is critical to future research. Culture influences what kinds of science are supported and where science can be conducted through ethical frameworks and evaluations of risk. Neuroscientists and philosophers alike have found themselves together encountering perennial questions; these questions are (...) engaged by the field of neuroethics, related to the nature of understanding the self and identity, the existence and meaning of free will, defining the role of reason in human behavior, and more. With this Perspective article, we aim to prioritize and advance to the foreground a list of neuroethics questions for neuroscientists operating in the context of these international brain initiatives. (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)

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long‐term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non‐acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics of (...) recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision‐making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna’s account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent‐related vulnerabilities, we suggest that a particular kind of exploitation‐related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low‐ and middle‐income countries. At the same time, the automatic exclusion of inpatients from research elicits justice‐related vulnerabilities. (shrink)

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI (...) and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies. (shrink)

In this commentary we argue for the value of involving people with a diagnosis of mental health disorders and/or their caregivers as co-researchers in mental health research. We claim that co-produ...

LANGUAGE NOTE | Document text in English; abstract also in Chinese. 腦機介面 (BCIs) 是大腦和電腦無需人工交互即可直接交流的一系列技術。隨著人工智能 (AI) 時代的到來，我們需要更多地關注腦機介面和人工智能的融合所帶來的倫理問題。那麼，與機器一起思考會帶來什麼樣的倫理問題？在本文中，圍繞這一主題，我們將重點關注以下問題：自主性、完整性、身分認同、隱私，以及 作為一種增強的方式，該技術在兒科領域的應用會帶來怎樣的風險和潛在收益。我們的結論是，雖然該技術存在多種令人擔憂的問題，同時也有可能帶來好處，但仍存在很大的不確定性。如果生命倫理學家想在這一領域有所建樹 ，他們就應該做好準備來迎接我們對醫學和醫療保健領域中一些我們視為核心價值的理解的重大轉變。 Brain-Computer Interfaces – BCIs – are a set of technologies with which brains and computers can communicate directly, without the need for manual interaction. As we are witnessing the dawn of an era in which Artificial Intelligence (AI) quite possibly will come to dominate the technological innovation landscape, we are compelled to ask questions about the ethical issues which the convergence of BCIs and AI (...) is poised to bring about. What are the ethics of thinking with machines? In this paper, we explore this question, focusing on some of the main arenas of ethical debate and contention, ranging from autonomy and integrity to identity and privacy, and discuss the risks and potential benefits of the technology in the domains of paediatric populations, and as a means of human enhancement. We conclude that, while there are multiple concerns as well as possibilities for the technology to do good, there are great uncertainties at play. If bioethicists want to stay relevant in this field, they ought to prepare themselves for seismic shift in how we conceptualise much of what we take to be core values in medicine and healthcare. (shrink)

This paper explores the dilemma faced by mental healthcare professionals in balancing treatment of mental disorders with promoting patient well-being and flourishing. With growing calls for a more explicit focus on patient flourishing in mental healthcare, we address two inter-related challenges: the lack of consensus on defining positive mental health and flourishing, and how professionals should respond to patients with controversial views on what is good for them. We discuss the relationship dynamics between healthcare providers and patients, proposing that ‘liberal’ (...) approaches can provide a pragmatic framework to address disagreements about well-being in the context of flourishing-oriented mental healthcare. We acknowledge the criticisms of these approaches, including the potential for unintended paternalism and distrust. To mitigate these risks, we conclude by suggesting a mechanism to minimize the likelihood of unintended paternalism and foster patient trust. (shrink)

Gluten ataxia is a rare immune-mediated neurological disorder caused by the ingestion of gluten. The diagnosis is not straightforward as antibodies are present in only up to 38% of patients, but often at lower titers. The symptoms of ataxia may be mild at the onset but lead to permanent damage if remain untreated. It is characterized by damage to the cerebellum however, the pathophysiology of the disease is not clearly understood. The present study investigated the neurochemical profile of vermis and (...) right cerebellum and structural changes in various brain regions of patients with gluten ataxia and compared it with healthy controls. Volumetric 3-D T1 and T1-weighted magnetic resonance imaging in the three planes of the whole brain and single-voxel 1H- magnetic resonance spectroscopy of the vermis and right cerebellum were acquired on 3 T human MR scanner. The metabolite concentrations were estimated using LC Model while brain volumes were estimated using the online tool volBrain pipeline and CERES and corrected for partial volumes. The levels of neuro-metabolites were found to be significantly lower in vermis, while N-acetyl aspartate + N-acetyl aspartate glutamate and glycerophosphocholine + phosphocholine was lower in cerebellum regions in the patients with gluten ataxia compared to healthy controls. A significant reduction in the white matter of ; reduction in the volumes of cerebellum lobe and thalamus while lateral ventricles were increased in the patients with gluten ataxia compared to healthy controls. The reduced neuronal metabolites along with structural changes in the brain suggested neuronal degeneration in the patients with gluten ataxia. Our preliminary findings may be useful in understanding the gluten-induced cerebral damage and indicated that MRI and MRS may serve as a non-invasive useful tool in the early diagnosis, thereby enabling better management of these patients. (shrink)

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 (e.g., pills, neural implants, and neuroprostheses). The Hybrid Framework was proposed by academic researchers working in the U.S. context and comprises “rules” for military neuroenhancement (e.g., (...) ensuring transparency and maintaining dignity of the warfighter). 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 (N = 332) 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)

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)

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)

Study of impermanence based on the philosophy of Theravāda Buddhism.

Business and Society Review, Volume 126, Issue 1, Page 101-104, Spring 2021.