Ilina Singh

University of Oxford | OX · Department of Psychiatry and Oxford Uehiro Centre

Lay abstract: Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and commun...

Background: Involving young people (YP) as co-researchers (YCoR) in mental health research is important for ethical and epistemological reasons. However, approaches to involve and evaluate 'meaningful involvement' in complex qualitative mental health research, and how to evaluate impacts (or change) for the co-researcher and the research is less w...

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...

Background Advances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy. Objectives This study aimed to investigate young...

Purpose Effective intervention, policy, and research in mental health and well-being (MHWB) requires young people to be understood not only as beneficiaries, but also as active agents in codesigning and implementing initiatives. To identify pathways for young people’s participation in promoting MHWB in low- and middle-income countries (LMICs), this...

Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a randomised controlled trial (ISRCTN99248812, 28/05/2020), we tested the short-term efficacy of an online training programme to equip young people with skills to support to the...

It is becoming increasingly clear that the field of empirical bioethics requires methodological innovations that can keep up with the scale and pace of contemporary research in health and medicine. With that in mind, we have recently argued for Design Bioethics—the use of purpose-built, engineered research tools that allow researchers to investigat...

"Across the globe the phenomenon of digital phenotyping – the collection and analysis of digital data for mental health – is growing increasingly popular within the education sector. Schools enter collaborations with health care providers, often with the aim to support young people and to reduce the risk for severe mental health challenges, self-ha...

Lay abstract: The perspective of autistic individuals is often left uncaptured, and as a result they are often excluded from making decisions that impact them. Conventional communication can be challenging for many autistic individuals, especially those who are minimally verbal or who have an associated intellectual disability. Currently, a lack o...

Background Advances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy. Objectives This study aimed to investigate young...

The Africa Ethics Working Group (AEWG) is a South-South-North collaboration of bioethics and mental health researchers from sub-Saharan Africa, working to tackle emerging ethical challenges in global mental health research. Initially formed to provide ethical guidance for a neuro-psychiatric genomics research project, AEWG has evolved to address cr...

Purpose Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer’s disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of you...

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 accu...

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 ac...

The COVID‐19 pandemic is having a pervasive effect on young people's mental health and well‐being, giving rise to feelings of deep uncertainty and lack of control. Inspired by Amartya Sen's capabilities framework, we argue that building capacity and creating opportunities for community and civic engagement during this time will help young people ga...

Background: Dementia has been described as the greatest global health challenge in the 21st century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, and political challenges about healthcare resource allocation, what health improvements matter to patient...

Background Dementia has been described as the greatest global health challenge in the 21st century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, political challenges about healthcare resource allocation, what health improvements matter to patients, and...

Research in bioethics largely relies on interviews and surveys, which engage participants with scenarios that are distal in time and place to an actual situation. However, context and embodiment are relevant to moral decision-making. Due to the potential to immerse participants in a simulated environment, purpose-built games and scenarios might pro...

New ethics are needed for twenty-first-century psychiatry. This chapter considers innovations in psychiatry that either raise new ethical questions for psychiatry or require a revision of prior understanding of what constitutes ethical behaviour in a psychiatric context. The chapter begins by examining two novel neurointerventions at opposite poles...

In the UK, medical cannabis was approved in November 2018, leading many patients to believe that the medicine would now be available on the NHS. Yet to date, there have been only 12 NHS prescriptions and less than 60 prescriptions in total. In marked contrast a recent patient survey found 1.4 million people are using illicit cannabis for medical pr...

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 str...

The attempt to identify individuals at the very early stages of psychotic illness, before they suffer from a psychotic episode, has clinical, ethical, and social implications. In this chapter, we provide an overview of the ethical issues that arise from the attempt to identify and treat psychosis risk. We organize such concerns around four question...

Context: Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to ident...

Introduction Matching treatment to specific patients is too often a matter of trial and error, while treatment efficacy should be optimised by limiting risks and costs and by incorporating patients’ preferences. Factors influencing an individual’s drug response in major depressive disorder may include a number of clinical variables (such as previou...

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 (YPA...

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...

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 concern...

There is substantial interest in the possibility that cognitive skills can be improved by dedicated behavioral training. Yet despite the large amount of work being conducted in this domain, there is not an explicit and widely agreed upon consensus around the best methodological practices. This document seeks to fill this gap. We start from the pers...

The NeuroDev study will deeply phenotype cognition, behavior, dysmorphias, and neuromedical traits on an expected cohort of 5,600 Africans (1,800 child cases, 1,800 child controls, and 1,900 parents) and will collect whole blood for exome sequencing and biobanking.

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 i...

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...

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 c...

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 mo...

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...

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...

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...

Appendix S1 England clinical guidelines relevant to EIP services.

Appendix S3 Moral attributes of clinicians: Sample quotes.

Appendix S2 Ethical requirements of service delivery: Sample quotes.

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 hea...

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 ma...

Attention deficit−hyperactivity disorder (ADHD) has been a common psychiatric diagnosis in both children and adults since the 1980s and 1990s in the United States. But the diagnosis was much less common—even unknown—in other parts of the world. By the end of the twentieth century, this was no longer the case, and ADHD diagnosis and treatment became...

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) b...

This paper reports on an online contrastive vignette study investigating the public's views of gene editing for therapy and enhancement in adult and prenatal contexts. The study, comprising quota samples of 1000 respondents per country, involved 10 European countries and the United States. Vignettes featuring gene editing for therapy compared to en...

Few empirical studies in the UK have examined the complex social patterns and values behind quantitative estimates of the prevalence of pharmacological cognitive enhancement (PCE). 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...

Parental Responsibility in the Context of Neuroscience and Genetics, by Kristien Hens, Daniela Cutas, and Dorothee Horstkötter. Cham, Switzerland: Springer International Publishing; 2017. 246 pp. - Volume 26 Issue 4 - Arianna Manzini, Rose Mortimer, Ilina Singh

Scientific understanding of genetically driven, neurobiological pathways that contribute to diverse developmental outcomes in children has advanced considerably in the past decade. As knowledge accumulates, various aspects of a child’s health, wellbeing, and even character, are increasingly framed as amenable to external control, through pharmacolo...

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...

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...

We present a review and analysis of the ethical considerations in off-label ketamine use for severe, treatment-resistant depression. The analysis of ethical considerations is contextualised in an overview of the evidence for ketamine use in depression, and a review of the drug's safety profile. We find that, based on current evidence, ketamine use...

Neurosurgical interventions for psychiatric disorders have a long and troubled history (1,2), but have become much more refined in the last few decades due to the rapid development of neuroimaging and robotic technologies (2). These advances have enabled the design of less invasive techniques which are more focused, such as Deep Brain Stimulation (...

The use of pharmaceuticals to support learning and behaviour in children has been a controversial topic since the 1990s. Concerns have been raised about overmedicating children, thwarting their moral develop with drugs, as well as providing an unfair advantage. Everyday enhancement can be understood as the grey area between unambiguously therapeuti...

Bioethics has long been accepted as an interdisciplinary field. The recent 'empirical turn' in bioethics is however, creating challenges that move beyond those of simple interdisciplinary collaboration, as researchers grapple with the methodological, empirical and meta-ethical challenges of combining the normative and the empirical, as well as navi...

Childhood troubles and mothering practices have attracted the interest of doctors and psychology experts for a long time, providing fertile terrain for popular medical advice, scientific research, and state programs. Yet while the 20th century was dubbed the century of the child, some would argue that we now live in the century of the brain and in...

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...

If the 62 world´s richest people own as much as the half of the global poorest (Hardoon et al.,2016), this is more than worrying and socially unacceptable, especially given that many of this poorest half are children. Increasing educational access and achievement of these children (but also of the poor in general) – that are often powerless to defe...

This paper is about the relationship between cities and brains: it charts the back-and-forth between the hectic, stressful lives of urban citizens, and a psychological and neurobiological literature that claims to make such stress both visible and know-able. But beyond such genealogical labour, the paper also asks: what can a sociology concerned wi...

This paper is about the relationship between cities and brains: it charts the back-and-forth between the hectic, stressful lives of urban citizens, and a psychological and neurobiological literature that claims to make such stress both visible and knowable. But beyond such genealogical labour, the paper also asks: what can a sociology concerned wit...

This paper proposes a re-thinking of the relationship between sociology and the biological sciences. Tracing lines of connection between the history of sociology and the contemporary landscape of biology, the paper argues for a reconfiguration of this relationship beyond popular rhetorics of 'biologization' or 'medicalization'. At the heart of the...

Novel neurotechnologies, such as brain-computer interfaces (BCI), are generating significant scientific and popular interest. A certain BCI technology, neurofeedback (NF), is increasingly used for managing the symptoms of many conditions, most notably attention deficit hyperactivity disorder (ADHD). Although growing evidence suggests that the metho...

We examine the contemporary debate on attention deficit hyperactivity disorder, in which concerns about medicalisation and overuse of drug treatments are paramount. We show medicalisation in attention deficit hyperactivity disorder to be a complex issue that requires systematic research to be properly understood. In particular, we suggest that the...

Use of 'smart drugs' among UK students is described in frequent media reports as a rapidly increasing phenomenon. This article reports findings from the first large-scale survey of pharmacological cognitive enhancement (PCE) among students in the UK and Ireland. Conducted from February to September 2012, a survey of a convenience sample of 877 stud...

Erler and Hope’s insightful article underlines the significance of authenticity to the experience of mental disorder; in particular of anorexia nervosa and bi-polar disorder, but also of depression and attention deficit/hyperactivity disorder (ADHD). Their analysis draws on personal accounts and empirical evidence to illustrate a range of ways in w...

Globalization of ADHD and the rise of cognitive enhancement have raised fresh concerns about the validity of ADHD diagnosis and the ethics of stimulant drug treatment. We review the literature on these two emerging phenomena, with a focus on the corresponding social, scientific and ethical debates over the universality of ADHD and the use of stimul...

This report looks at the possible benefits and unintended consequences of intervening in the brain, and sets out an ethical framework to guide the practices of those involved in development, regulation, use and promotion of novel neurotechnologies. - See more at: http://nuffieldbioethics.org/project/neurotechnology/#sthash.VEQ6xFkd.dpuf

This chapter defends that over time, stimulants and other neuroenhancers will increasingly be used to enhance young people's cognitive and behavioural functioning, alongside growing general public acceptability of neuroenhancers as tools to improve academic, social and workplace performance. The chapter focuses on the most common current neuroenhan...

This article examines children's discourse about self, brain and behaviour, focusing on the dynamics of power, knowledge and responsibility articulated by children. The empirical data discussed in this article are drawn from the study of Voices on Identity, Childhood, Ethics and Stimulants, which included interviews with 151 US and UK children, a s...

In this essay, I explore what social science might contribute to building a better understanding of relations between ‘nature’ and ‘nurture’ in human development. I first outline changing scientific perspectives on the role of the environment in the developmental and behavioural sciences, beginning with a general historical view of the developmenta...

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...

This article reviews current data on the use of cognition enhancers as study aids in the student population. It identifies gaps and uncertainties in the knowledge required to make a balanced assessment of the need for some form of regulation. The review highlights the weak evidence on the prevalence of use of such drugs, especially outside the US,...

In our examination of the scientific, social and ethical implications of research into autism biomarkers we called for a widespread debate involving many diverse parties and including, importantly, scientists and members of the autism community and their carers (In search of biomarkers for autism: scientific, social and ethical challenges. Nature R...