Ilina Singh


Ilina is Professor of Neuroscience & Society at the University of Oxford, where she holds a joint appointment between the Department of Psychiatry and the Faculty of Philosophy (Oxford Centre for Neuroethics and Uehiro Centre). Her work examines the psychosocial and ethical implications of advances in biomedicine and neuroscience for young people and families. This reflects a longstanding commitment to bringing the first person experiences of children and young people into ethical evaluation, clinical decision-making and policy-making.

In 2015, Ilina received a 5 year Wellcome Trust Senior Investigator Award for a study entitled: Becoming Good: Early Intervention and Moral Development in Child Psychiatry. Past projects include ADHD VOICES, Neuroenhancement Responsible Research and Innovation; and the Urban Brain Project.

Ilina has contributed to various scientific and policy groups, including the UK National Institute for Health and Care Excellence (NICE), US National Institute of Mental Health (NIMH) and the Nuffield Council on Bioethics. More recently, Ilina was part of the expert working group representing children and young people for the UK Department of Health 10 year strategy report, ‘A framework for mental health research’. She is a co-chair of the Ethics Advisory Board for the EU-AIMS project on autism treatments and is an expert advisor for the National Autism Project.

Ilina has published widely in eminent journals, including Nature, Nature Reviews Neuroscience, Social Science and Medicine, and the American Journal of Bioethics. She is the lead editor of BioPrediction, Biomarkers and Bad Behavior: Scientific, Ethical and Legal Challenges (Oxford Series in Neuroscience, Law, and Philsophy. Oxford University Press, 2013), and a co-editor of Global ADHD (John Hopkins University Press, 2017). She is a founding editor of the journal BioSocieties and a member of the AJOB Neuroscience and Qualitative Psychology editorial boards.

Ilina received her BA and MA from the University of Pennsylvania, and her PhD from Harvard. In 2013, Ilina was elected as a Fellow of the Hastings Center, an honour awarded to individuals of outstanding accomplishment whose work has informed scholarship and public understanding of complex ethical issues in health, health care, life sciences research and the environment.

Publications

  • Debate: Promoting capabilities for young people’s agency in the COVID-19 outbreak.

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    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 gain agency and well‐being. We highlight two key areas for participatory engagement: coproduction of research, and peer‐led interventions. Providing capabilities for young people's agency not only builds personal resilience, but also strengthens the quality of our research, interventions and overall response to the global health crisis.

  • Multidisciplinary research priorities for the COVID-19 pandemic.

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  • Ethical implications of poor comparative effectiveness evidence: obligations in industry-research partnerships.

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  • Investigating assumptions of vulnerability: A case study of the exclusion of psychiatric inpatients as participants in genetic research in low- and middle-income contexts.

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    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.

  • Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.

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    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 identify how participation can improve research. OBJECTIVE: This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact. DISCUSSION: While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts. CONCLUSIONS: We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.