Publications : Journal articles

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

May 16, 2019. Posted in

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

CONTEXT: The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people’s perspectives on health and wellness-related concerns and that involves children as ‘co-researchers’. Young people’s advisory groups (YPAGs) are a widely used method to enable young people’s involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups.

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

March 10, 2019. 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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Smarter Than Thou, Holier Than Thou: The Dynamic Interplay Between Cognitive and Moral Enhancement

October 29, 2018. 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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The Lancet Commission on global mental health and sustainable development.

October 10, 2018. Posted in

Authors: Gabriela Pavarini, Ilina Singh

The Sustainable Development Goals (SDGs) represent an exponential advance from the Millennium Development Goals, with a substantially broader agenda affecting all nations and requiring coordinated global actions. The specific references to mental health and substance use as targets within the health SDG reflect this transformative vision. In 2007, a series of papers in The Lancet synthesised decades of interdisciplinary research and practice in diverse contexts and called the global community to action to scale up services for people affected by mental disorders (including substance use disorders, self-harm, and dementia), in particular in low-income and middle-income countries in which the attainment of human rights to care and dignity were most seriously compromised. 10 years on, this Commission reassesses the global mental health agenda in the context of the SDGs.

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Pragmatic Neuroethics: Lived Experiences as a Source of Moral Knowledge

October 10, 2018. Posted in

Authors: Gabriela Pavarini, Ilina Singh

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.

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Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives.

September 10, 2018. Posted in

Authors: Ilina Singh

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.

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

April 10, 2018. 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

February 14, 2018. Posted in

Authors: Ilina Singh

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.

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Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits

December 11, 2017. Posted in

Authors: Arianna Manzini

Predictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial role in favour of predictive testing for other conditions, little research has explored such a role in psychiatric disorders. This paper outlines the potential non-medical benefits and harms of psychiatric genetic testing in minors in order to consider whether the non-medical benefits could ever make such testing appropriate. Five non-medical themes arise in the literature: psychological impacts, autonomy/self-determination, implications of the biomedical approach, use of financial and intellectual resources, and discrimination. Non-medical benefits were prominent in all of them, suggesting that psychiatric genetic testing in minors may be appropriate in some circumstances. Further research needs to empirically assess these potential non-medical benefits, incorporate minors in the debate, and include normative reflection to evaluate the very purposes and motivations of psychiatric genetic testing in minors.

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