Publications

Smarter Than Thou, Holier Than Thou: The Dynamic Interplay Between Cognitive and Moral Enhancement.

August 5, 2022. Posted in

Authors: Gabriela Pavarini, Alex McKeown, Ilina Singh

The debate about the desirability of using drugs to enhance human skills encompasses cognitive abilities such as memory and attention, and moral capacities such as emotional empathy and a sense of fairness. These two strands of literature in bioethics have grown relatively independent from each other, and an implicit framing assumption has emerged suggesting that apparently morally neutral cognitive capacities and paradigmatically moral capacities are distinct and vary independently of each other. Here, we identify key distinctions between competing accounts of cognitive enhancement and moral enhancement and argue that, despite the polarized nature of the bioethical debate, cognitive and moral capacities are intertwined. For example, moral behavior can be improved by enhancing “morally neutral” abilities such as attention span; and cognitive skills can be honed by means of socio-moral interaction. Further, cognitive skill is frequently assigned the abstract status of virtue and treated in the same way as more paradigmatically “moral” traits. We argue that the distinction between moral and cognitive enhancement is more apparent than real, since despite being nominally treated as distinct, cognitive and moral skills are frequently interdependent. As such we present evidence to support the claim that the enhancement of these two kinds of capacities cannot be clearly disaggregated from each other in the way that the theoretical poles of the debate in the literature suggest. We synthesize relevant scientific and bioethical literature and combine it with a line of analysis derived from Peter Hacker to show more clearly the terms of what can be said intelligibly about cognitive and moral skills and their enhancement. As a result of this analysis, we conclude that ethical questions in human bioenhancement are only fully intelligible at the level of persons imbued with feelings, thoughts, intentions, desires, values, and abilities, embedded within a particular social context, rather than at the level of pharmacological modulation of particular cognitive or affective capacities which, though conceptually distinguishable, in the embodied context of moral agency are profoundly intertwined.

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Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism

August 5, 2022. Posted in

Authors: Ilina Singh

Background

Guidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.

Objective

Our objective was to scrutinize patient and public involvement (PPI) by a pan-European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research.

Setting, participants and analysis

Two public events, one in the UK and one in Denmark were conducted as part of the consortium’s on-going PPI activities in 2014 and 2015. Sixty-six individuals submitted written comments on the consortium’s research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.

Results

The themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co-occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on-going.

Discussion

This case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue.

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What constitutes ‘good practice’ in early intervention for psychosis? Analysis of clinical guidelines.

August 5, 2022. Posted in

Authors: Ilina Singh

Background

Early Intervention in Psychosis (EIP) services have been implemented with the dual aims of preventing harmful outcomes associated with early-onset psychosis and improving prognosis. However, concerns have been raised regarding the ethical implications of involving young people in EIP services. One way to ensure high ethical standards and promote good practice in EIP delivery is through governance of clinical practice. This study aimed to investigate the normative dimensions of good practice in EIP through examination of clinical guideline documents published in England over the past 15 years.

Methods

A total of 14 clinical guidelines and relevant policy documents for EIP were retrieved and analysed using a mixed inductive and deductive thematic approach. Themes were derived from the data itself, whereas the development of broader categories was performed through a constant comparison with the scientific literature describing ethical issues in EIP.

Results

Ethical touchpoints of good practice in EIP included both procedural and substantive factors, which were seen to be interdependent and mutually constitutive. These ethical touchpoints were largely implicit in the documents analysed. Procedural requirements of EIP service delivery consisted of norms and rules pertaining to EIP service structure, adherence to codes of ethics, inclusivity, patient and family centredness and appropriate treatment provision. Substantive factors consisted of moral attributes that should be cultivated by healthcare professionals working in EIP: competency, empathy, sensitivity and trustworthiness.

Conclusions

We argue that, to ensure good practice in EIP, procedural and substantive ethical expectations embedded in EIP guideline documents should be made explicit in EIP service and care delivery. We suggest that the procedural and substantive factors highlighted in this paper contribute useful dimensions for the eventual evaluation of good practice in EIP services across England.

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The ethics of global psychiatric genomics: Multilayered challenges to integrating genomics in global mental health and disability-A position paper of the Oxford Global Initiative in Neuropsychiatric GenEthics (NeuroGenE).

August 5, 2022. Posted in

Authors: Camillia Kong, Ilina Singh

Psychiatric genomics has the potential to radically improve the prevention and early intervention of serious mental and neurodevelopmental disorders worldwide. However, little work has been done on the ethics of psychiatric genomics—an oversight that could result in poor local uptake, reduced practical/clinical application, and ethical violations in this rapidly developing area of scientific research. As part of the Global Project of the Stanley Center for Psychiatric Research, the Global Initiative in Neuropsychiatric GenEthics (NeuroGenE) based at the University of Oxford aims to embed ethical inquiry within scientific investigation and engage with fundamental ethical questions around a psychiatric genomics approach to mental and neurodevelopmental disorder. This position paper sets out the core aims of the NeuroGenE research programme and explores the importance of a crosscutting research orientation in this field based on multidisciplinary methodologies which can ensure that efforts to translate and apply global psychiatric genomics in public policy and clinical practice are ethically grounded strategies, respectful of different cultures and contexts.

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Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities.

August 2, 2022. Posted in

Authors: Ilina Singh

Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions.

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Can Your Phone Be Your Therapist? Young People’s Ethical Perspectives on the Use of Fully Automated Conversational Agents (Chatbots) in Mental Health Support.

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Arianna Manzini, Ilina Singh

Over the last decade, there has been an explosion of digital interventions that aim to either supplement or replace face-to-face mental health services. More recently, a number of automated conversational agents have also been made available, which respond to users in ways that mirror a real-life interaction. What are the social and ethical concerns that arise from these advances? In this article, we discuss, from a young person’s perspective, the strengths and limitations of using chatbots in mental health support. We also outline what we consider to be minimum ethical standards for these platforms, including issues surrounding privacy and confidentiality, efficacy, and safety, and review three existing platforms (Woebot, Joy, and Wysa) according to our proposed framework. It is our hope that this article will stimulate ethical debate among app developers, practitioners, young people, and other stakeholders, and inspire ethically responsible practice in digital mental health.

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Co-producing research with youth: The NeurOx young people’s advisory group model.

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Jessica Lorimer, Arianna Manzini, Ilina Singh

Objective

In this paper, we provide a step-by-step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People’s Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co-production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact.

Results

We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co-production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on-going evaluations on the impact of the group on both the young people and the research.

Conclusion

Adopting a critical and reflective attitude can increase researchers’ capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience’s needs and priorities.

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