Publications

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

August 13, 2020. Posted in

Authors: Gabriela Pavarini, Kiran Manku, David Lyreskog, Rosemary Musesengwa, Ilina Singh

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.

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Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia

August 6, 2020. Posted in

Authors: David Lyreskog

Philosophers and clinicians struggle with how to determine the validity of an advance directive to guide the care of a person living with dementia. Although Walsh (2020) highlights this important and enduring issue in bioethics that animates this struggle—the challenging gap between theoretical ethical and philosophical research on the one side, and clinical practices and research on the other—the principles she proposes to guide and improve the interpretation of advance directives don’t entirely bridge this gap.

One of the key problems seems to be a muddled idea of retention of values in general, and autonomy (as a moral value) in particular. Medical guidelines and practices, and intricate theoretical accounts share an assumption. Patient autonomy is interpreted as something solely situated in the patient, and the patient alone, and mustn’t be interfered with. Under this assumption, advance directives, as documents safeguarding the autonomous choices of competent agents, are problematic. Like some clever prankster, they set up a conflict in the interpretation of the very autonomy they are meant to protect: what ought we to do when respect for the autonomy of patient P prescribes that we both respect Will Number 1 (W1) and Will Number 2 (W2) when W1 and W2 are mutually exclusive? This conflict becomes painfully clear in cases where P’s W1 is expressed in an advance directive as, say, “do not continue to feed me if I’m not able to feed myself,” and W2 is P’s expressed will to live to eat, enjoying ice cream but refusing to eat broccoli. In the end, we seem stuck on a question: “Which person do we listen to, the ‘then self’ or the ‘now self?’”

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A potential role for psilocybin in the treatment of obsessive-compulsive disorder

July 17, 2020. Posted in

Authors: Eddie Jacobs

The recent revivification of interest in the therapeutic use of psychedelics has had a particular focus on mood disorders and addiction, although there is reason to think these drugs may be effective more widely. After outlining pertinent aspects of psilocybin and obsessive-compulsive disorder (OCD), the current review summarizes the evidence indicating that there may be a role for psilocybin in the treatment of OCD, as well as highlighting a range of potential therapeutic mechanisms that reflect the action of psilocybin on brain function. Although the current evidence is limited, that multiple signals point in directions consistent with treatment potential, alongside the psychological and physiological safety of clinically administered psilocybin, support the expansion of research, both in animal models and in further randomized controlled trials, to properly investigate this potential.

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What do we owe to Novel Synthetic Beings and how can we be sure?

June 10, 2020. Posted in

Authors: Alex McKeown

Embodiment is typically given insufficient weight in debates concerning the moral status of Novel Synthetic Beings (NSBs) such as sentient or sapient Artificial Intelligences (AIs). Discussion usually turns on whether AIs are conscious or self-aware, but this does not exhaust what is morally relevant. Since moral agency encompasses what a being wants to do, the means by which it enacts choices in the world is a feature of such agency. In determining the moral status of NSBs and our obligations to them, therefore, we must consider how their corporeality shapes their options, preferences, values, and is constitutive of their moral universe. Analysing AI embodiment and the coupling between cognition and world, the paper shows why determination of moral status is only sensible in terms of the whole being, rather than mental sophistication alone, and why failure to do this leads to an impoverished account of our obligations to such NSBs.

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The voices of children in the global health debate

June 10, 2020. Posted in

Authors: Gabriela Pavarini

In the face of imminent threats arising from climate change, commercial marketing of harmful products, and pervasive inequities, the new WHO–UNICEF–Lancet Commission makes a compelling ethical and economic case for investing in the world’s children. The Commission advocates for children to be at the centre of the Sustainable Development Goals (SDGs) and for the protection of their health and rights. This agenda is essential and urgent to avoid mistakes that could cost a generation the chance to grow up safely, happily, and with abundant resources.

Crucially, the Commission recognises children and adolescents as active agents with rights to freedom of expression, dignity, and citizenship: decision makers in their own lives and in society at large. Integrating young people into decision making contributes to a more cohesive and egalitarian society, catalysing our ability to create a sustainable and healthy future

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

March 19, 2020. Posted in

Authors: Ilina Singh

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Developing sustainable capacity-building in mental health research: implementation outcomes of training of trainers in systematic reviewing

February 10, 2020. Posted in

Authors: Rosemary Musesengwa

Less than 1% of biomedical research papers originate in Africa. Locally relevant mental health research, including synthesis of existing evidence, is essential for developing interventions and strengthening health systems, but institutions may lack the capacity to deliver training on systematic reviewing for publication in international journals. This paper describes the development and implementation of a training-of-trainers (ToT) course on systematic reviewing.

The ToT prepared junior faculty (‘trainers’) from universities in Ethiopia, Malawi, and Zimbabwe to lead a five-day systematic reviewing workshop. Using an evaluation framework based on implementation science outcomes, the feasibility of the ToT was assessed by tracking the number of workshops the trainers subsequently conducted and the number of trainers and trainees who participated; acceptability was assessed through post-workshop surveys on trainee perspectives; impact was evaluated through trainee scores on a 15-item multiple choice test on systematic reviewing concepts; and sustainability was assessed based on whether the workshop was integrated into university curricula. Twelve trainers (86% of those trained) facilitated a total of seven workshops in their home countries (total 103 trainees). The first workshop run in each country was evaluated, and there was a significant improvement in mean knowledge scores between pre- and post-tests among trainees (MD= 3.07, t= 5.90, 95% CI 2.02–4.11).

In two of the three countries, there are efforts to integrate the systematic review workshop into university curricula. The cost of the workshop led by the international trainer was $1480 per participant, whereas the trainer-led workshops cost approximately $240 per participant. Overall, ToT is relatively new to research capacity building, although it has been used widely in clinical settings. Our findings suggest ToT is a promising, low-cost way to develop both technical skills of individuals and the pedagogical capacity of universities, and to promote sustainability of research capacity building programs that often have time-limited grant funding.

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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.

January 14, 2020. Posted in

Authors: Ilina Singh

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.

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

December 18, 2019. Posted in

Authors: Sapfo Lignou, Ilina Singh

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.

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