Publications

Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders – reflections on Jonsson et al. (2017).

August 5, 2022. Posted in

Authors: Ilina Singh

Jonsson et al.’s excellent review of the literature on quality of life (QoL) and childhood mental and behavioural disorders (Jonsson et al., 2017) highlights the need for studies that utilise child self-reported QoL, in contrast to parent or proxy QoL measures, and further challenges the field to develop QoL measures that ‘put the child’s own views and priorities first’.

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Commentary: On action guidance and good practice in early intervention for psychosis: a response to Bortolotti & Jefferson (2018).

August 5, 2022. Posted in

Authors: Ilina Singh

In this response to Bortolotti and Jefferson (2018), we discuss the action-guidance problem of moral attributes and the risk of superiority illusion in early intervention for psychosis. First, we suggest that guidance documents are not devoid of behavioural recommendations and goals for service provision, though these are not linked to the ethical dimensions of good practice embedded in the documents. Second, we acknowledge the risk of superiority illusion; we suggest that this risk may be reduced if the ethical and clinical goals of early intervention are presented as interrelated and measurable.

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

August 5, 2022. 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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Commentary: What aspects of good practice in early interventions in psychosis can be codified in guidelines? – A commentary on Corsico et al. (2018).

August 5, 2022. Posted in

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Evaluation of the minimum age for consent to mental health treatment with the minimum age of criminal responsibility in children and adolescents: a global comparison.

August 5, 2022. Posted in

Authors: Ilina Singh

Background In many countries, a young person who seeks medical care is not authorised to consent to their own assessment and treatment, yet the same child can be tried for a criminal offence. The absence of child and adolescent mental health legislation in most countries exacerbates the issues young people face in independently accessing mental healthcare. Countries with existing legislation rarely define a minimum age for mental health consent (MAMHC). In stark contrast, nearly all 196 nations studied maintain legislation defining a minimum age of criminal responsibility (MACR).

Objective This review highlights inconsistent developmental and legal perspectives in defined markers of competency across medical and judicial systems.

Methods A review of the MAMHC was performed and compared with MACR for the 52 countries for which policy data could be identified through publicly available sources.

Findings Only 18% of countries maintain identifiable mental health policies specific to children’s mental health needs. Of those reviewed, only 11 nations maintained a defined MAMHC, with 7 of 11 having a MAMHC 2 years higher than the country’s legislated MACR.

Conclusions With increasing scientific understanding of the influences on child and adolescent decision making, some investment in the evidence-base and reconciliation of the very different approaches to child and adolescent consent is needed.

Clinical implications A more coherent approach to child and adolescent consent across disciplines could help improve the accessibility of services for young people and facilitate mental health professionals and services as well as criminal justice systems deliver optimal care.

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Just Policy? An Ethical Analysis of Early Intervention Policy Guidance.

August 5, 2022. Posted in

Authors: Rose Mortimer, Alex McKeown, Ilina Singh

Early intervention (EI) 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.

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Fair, just and compassionate: A pilot for making allocation decisions for patients requesting experimental drugs outside of clinical trials.

August 5, 2022. Posted in

Authors: Ilina Singh

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 (CompAC). 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.

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Bottom Up Ethics – Neuroenhancement in Education and Employment.

August 5, 2022. Posted in

Authors: Ilina Singh

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.

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Pragmatic Neuroethics: Lived Experiences as a Source of Moral Knowledge.

August 5, 2022. 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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