Publications : Journal articles

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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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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Why research ethics should add retrospective review

October 10, 2019. Posted in

Authors: Sapfo Lignou

Research ethics is an integral part of research, especially that involving human subjects. However, concerns have been expressed that research ethics has come to be seen as a procedural concern focused on a few well-established ethical issues that researchers need to address to obtain ethical approval to begin their research. While such prospective review of research is important, we argue that it is not sufficient to address all aspects of research ethics. We propose retrospective review as an important complement to prospective review. We offer two arguments to support our claim that prospective review is insufficient.

First, as currently practiced, research ethics has become for some a ‘tick box’ exercise to get over the ‘hurdle’ of ethics approval. This fails to capture much of what is important in ethics and does not promote careful reflection on the ethical issues involved. Second, the current approach tends to be rules-based and we argue that research ethics should go beyond this to develop people’s capacity to be sensitive to the relevant moral features of their research, their ethical decision-making skills and their integrity. Retrospective review of a project’s ethical issues, and how they were addressed, could help to achieve those aims better. We believe that a broad range of stakeholders should be involved in such retrospective review, including representatives of ethics committees, participating communities and those involved in the research.

All stakeholders could then learn from others’ perspectives and experiences. An open and transparent assessment of research could help to promote trust and understanding between stakeholders, as well as identifying areas of agreement and disagreement and how these can be built upon or addressed. Retrospective review also has the potential to promote critical reflection on ethics and help to develop ethical sensitivity and integrity within the research team. Demonstrating this would take empirical evidence and we suggest that any such initiatives should be accompanied by research into their effectiveness. Our article concludes with a discussion of some possible objections to our proposal, and an invitation to further debate and discussion.

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Ethical challenges of integration across primary and secondary care: a qualitative and normative analysis

July 3, 2019. Posted in

Authors: Alex McKeown

Background

This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis at the policy level for the entire healthcare infrastructure to become better integrated, our analysis of the ethical challenges that follow from the logic of integration itself is timely and important and has hitherto received insufficient attention.

Methods

We evaluated an educational intervention which aims to improve child health outcomes by making transitions between primary to secondary care more efficient, ensuring children and parents are better supported throughout. The programme provided skills for trainee paediatricians and general practitioners (GPs) in co-designing integrated clinical services.

Results

The key ethical challenges of integrated care that arose from a clinical perspective are: professional identity and autonomy in an integrated working environment; the concomitant extent of professional responsibility in such an environment; and the urgent need for more evidence to be produced on which strategies for integrating at scale can be based.

Conclusions

From our analysis we suggest a tentative way forward, viewed from a normative position broadly situated at the intersection of deontology and care ethics. We adopt this position because the primary clinical ethical issues in the context of integrated care concern: how to ensure that all duties of care to individual patients are met in a newly orientated working environment where clinical responsibility may be ambiguous; and the need to orientate care around the patient by foregrounding their autonomous preferences and ensuring good patient clinician relationships in clinical decision-making.

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On frail minds: addressing and assessing age-related neural decline and disease

June 10, 2019. Posted in

Authors: David Lyreskog

The terminology surrounding frailty is used in clinical settings, and in research and development for identifying processes of, and patients in, age-related physical decline. However, a framework suitable for age-related neurodegenerative diseases needs to (1) adequately account for the effects that the processes of aging have on neural decline and disease, and (2) be helpful in identifying relevant groups of users and patients. This is becoming increasingly necessary due to emerging possibilities to detect, prevent, and treat age-related neural decline and disease. Based on a number of relevant criteria, I distinguish four groups of patients and users: robust, non-frail, pre-frail, and frail. With the four groups defined, ethical assessments can be made on an individual basis regarding which medical technologies are best suited for a person who risks, or suffers from, age-related neurodegenerative disease.

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