Publications

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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Co-Production: An Ethical Model for Mental Health Research?

July 10, 2019. Posted in

Authors: Sapfo Lignou, Ilina Singh

In this commentary we argue for the value of involving people with a diagnosis of mental health disorders and/or their caregivers as co-researchers in mental health research. We claim that co-production shares key ethical values with the citizen science approach, such as the acknowledgment of the right of citizens to manage their own care and the value of “expertise by experience.”

These values are especially important in a mental health context and should not be overlooked. Moreover, we argue that research collaborations involving people with a diagnosis of mental health disorders and/or their caregivers avoid certain important ethical challenges posed by some citizen science models, such as the need to develop a different model of ethical oversight

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Is coercion ever beneficent? Public health ethics in early intervention and prevention for mental health

July 10, 2019. Posted in

Authors: Alex McKeown, Arianna Manzini, Ilina Singh

Early intervention in mental health seeks to improve the wellbeing of as many people as possible, by intervening at an early stage in the onset of illness, or by taking preventative action in ‘at risk’ populations. The paradigm is rhetorically powerful, and it is easy to talk in terms of it helping to deliver rights to health and realise social justice.

However, in spite – or perhaps because – of the apparently unarguable desirability of such goals, it is harder to discuss rights to dissent. In this respect the risk of coercion is an issue that should be discussed, especially because of the stigmatizing effect that the labelling associated with early intervention may have in mental health contexts. Here we explore this issue, with a particular focus on its practical and ethical implications in relation to UK policy for treating Attention Deficit Hyperactivity Disorder and mild Conduct Disorder in young people.

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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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Neuro-enhancement at the Margins of Autonomy: In the Best Interest of Children and Elderly?

June 10, 2019. Posted in

Authors: David Lyreskog

The prospects of neuro-enhancement have generated a large range of philosophical and ethical debates. The possibility of pediatric neuro-enhancement—using technology and pharmaceuticals to enhance children’s cognitive or emotive capacities—is particularly complicated for a number of reasons. One of the main reasons is that children (at least young children) are not autonomous and can therefore not possibly consent to any interventions. Nonetheless, parents can potentially make decisions to enhance the capacities of their children.

In this chapter I investigate ethical issues of pediatric neuro-enhancement and neuro-enhancement in elderly with diminishing autonomy. I argue that the similarities and differences between the philosophical and ethical questions that arise in the respective cases show how complicated neuro-enhancement in non-autonomous persons is. In particular, I look at three issues: (1) What kinds of autonomy are diminished or underdeveloped, and how does that affect the moral permissibility of neuro-enhancement? (2) What role does the concept of “an open future” play? (3) What does it mean to look out for “the best interest” of a child or a non-autonomous elderly person, and how does it translate to the permissibility of neuro-enhancement? I argue that the difference in how we conceptualize the non-autonomy of children and that of elderly affects the permissibility of neuro-enhancement. I conclude that, as long as we make sure that a person becomes autonomous enough to pursue her own autonomy as a condition and as an ideal, her best interests have been looked after in terms of autonomy.

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Co-producing research with youth: The NeurOx young people’s advisory group model.

May 16, 2019. Posted in

Authors: Gabriela Pavarini, Jessica Lorimer, Arianna Manzini, Ilina Singh

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 (YPAGs) are a widely used method to enable young people’s involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups.

OBJECTIVE: In this paper, we provide a step-by-step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People’s Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co-production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact.

RESULTS: We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co-production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on-going evaluations on the impact of the group on both the young people and the research.

CONCLUSION: Adopting a critical and reflective attitude can increase researchers’ capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience’s needs and priorities.

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Can Your Phone Be Your Therapist? Young People’s Ethical Perspectives on the Use of Fully Automated Conversational Agents (Chatbots) in Mental Health Support.

March 10, 2019. Posted in

Authors: Gabriela Pavarini, Arianna Manzini, Ilina Singh

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 concerns that arise from these advances? In this article, we discuss, from a young person’s perspective, the strengths and limitations of using chatbots in mental health support. We also outline what we consider to be minimum ethical standards for these platforms, including issues surrounding privacy and confidentiality, efficacy, and safety, and review three existing platforms (Woebot, Joy, and Wysa) according to our proposed framework. It is our hope that this article will stimulate ethical debate among app developers, practitioners, young people, and other stakeholders, and inspire ethically responsible practice in digital mental health.

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What outcomes are important to patients with mild cognitive impairment or Alzheimer’s disease, their caregivers, and health-care professionals? A systematic review

January 9, 2019. Posted in

Authors: Alex McKeown

Introduction

Clinical trials involving patients with Alzheimer’s disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders.

Methods

A systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included.

Results

Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease.

Discussion

Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

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