Publications

The moral economy of early intervention

August 2, 2022. Posted in

In November 2015, protests erupted in Oxford in response to the decision of the Oxfordshire County Council to cut, among other things, forty-four Children’s Centres and seven Early Intervention Hubs. The debate about whether these centres could be considered as disposable or not did not get to an agreement. I argue that the main cause of this outcome is that the opposing arguments were based on moral positions that were not only incompatible but fundamentally incommensurable. Those in favour of reducing deficit spending argue that cuts to social services (including family and children services) are unavoidable. Parents, however, refuse to accept austerity measures that will undermine the rights of their children to access services that will improve their chances in life. Neither position is based on incontrovertible evidence. On the one hand, the decision to cut a given service always involves the arbitrary evaluation of that service against other services that will not be cut. On the other, the demand to fund those services is based on the hope that early intervention initiatives will benefit children, even if the evidence that early intervention works is unconclusive or thin. On the basis of a thematic analysis of twenty-seven stories written by Oxfordshire parents, I interpret this conflict using the notion of moral economy, and argue that such an approach allows an appreciation of the link between health economics, perinatal mental health, the morality of parenting, and the early intervention discourse.

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Gamifying bioethics

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Jessica Lorimer, Ilina Singh

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 prove valuable as empirical tools. As a case study of gamifying bioethics, we describe the co-design and implementation of “What Lies Ahead?”, a digital role-play scenario for research with adolescents. “What Lies Ahead?” engages young people with ethical issues related to predictive technologies in psychiatry. As preliminary evidence of the validity of this gamified approach, we report qualitative results suggesting that the role-play was immersive, and elicited authentic responses and reflective thinking in adolescent participants. Even though application of game-play mechanics is rare in bioethics, we find digital role-play to be a powerful tool that collects data through real-time, realistic scenarios.

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Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance

August 2, 2022. Posted in

Authors: Sapfo Lignou, Ilina Singh

Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among Research institutions, Industry (pharmaceutical and biotech) and People with lived experience of mental illness (RIPs) in the NIHR services. There are several benefits but also challenges in such partnerships. An ethics-based approach to anticipating and addressing such problems is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and effective collaborations in NIHR-funded mental health research is essential.
Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health research and in the references of short-listed articles. Following application of exclusion criteria, remaining articles were critically examined and summarised to synthesise principles for ethical RIPs and inform clear guidance and practices.
Results: Critical analysis and synthesis of the short-listed articles highlighted the need for two sets of principles to guide ethical RIPs: principles for (a) RIPs as a trustworthy enterprise and (b) fair RIPs. We discuss the application of these principles in problem-solving strategies that can support best practice in establishing fair and effective research partnerships among research institutions, industry and people with lived experience of mental illness in the NIHR services.
Conclusions: Ethical guidance is needed to prevent and address challenges in RIPs and to promote the scientific and social benefits of these new research partnership models in mental health research in the NIHR services. We show how the proposed moral framework can guide research partners in designing, sustaining and assessing ethical and effective mental health research collaborations.
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Debate: Promoting capabilities for young people’s agency in the COVID-19 outbreak.

August 2, 2022. Posted in

Authors: Gabriela Pavarini, David Lyreskog, Kiran Manku, 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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Governing AI-Driven Health Research: Are IRBs Up to the Task?

August 2, 2022. Posted in

Authors: Jessica Lorimer

Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model’s origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be adapted in order to provide an effective mechanism of oversight for health-related AI research

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Ethical dimensions of translational developmental neuroscience research in autism.

August 2, 2022. Posted in

Authors: Arianna Manzini, Ilina Singh

Background

Since the 1990s, increasing research has been devoted to the identification of biomarkers for autism to help attain more objective diagnosis; enable early prediction of prognosis; and guide individualized intervention options. Early studies focused on the identification of genetic variants associated with autism, but more recently, research has expanded to investigate neurodevelopmental markers. While ethicists have extensively discussed issues around advances in autism genomics, much less ethical scrutiny has focused on research on early neurodevelopment and on the interventions being developed as a result.

Objectives

We summarize the current state of the science on the identification of early markers for autism and its potential clinical applications, before providing an overview of the ethical issues arising from increasing understanding of children’s neurodevelopment in very early life.

Results

Advances in the understanding of brain and behavioral trajectories preceding later autism diagnosis raise ethical concerns around three themes: (a) New models for understanding autism; (b) Risks and benefits of early identification and intervention; and (c) Communication of early concerns to families. These ethical issues should be further investigated in research conducted in partnership with autistic people and their families.

Conclusions

This paper highlights the need for ethical scrutiny of early neurodevelopmental research in autism. Scrutiny requires expertise and methods from the basic sciences and bioethics, as well as constructive collaborations among autistic people, their parents, and autism researchers to anticipate early interventions that serve the community’s interests and accommodate the varied experiences and preferences of people on the spectrum and their families.

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Ethics of Early Intervention in Alzheimer’s Disease.

August 2, 2022. Posted in

Authors: Alex McKeown, Ilina Singh

Alzheimer’s disease (AD) research, treatment, and prevention focus increasingly on developing personalized interventions based on personal genetic, biological, phenotypic data, for early intervention (EI) to limit harm. This approach has much to recommend it, but important ethical and philosophical challenges follow that should be considered, which we analyze here. We argue that advancing understanding of the causes of AD undermines the clarity of the distinction between primary and secondary prevention. This makes it increasingly unclear how primary and secondary categories can be appealed to as the basis for making judgements about what interventions are permissible, and for distinguishing between acceptably vs unacceptably early points in life to intervene. Timely efforts at prevention are vital for limiting harm from AD and given the logic of EI is that, in presence of risk, earlier is better, one might assume that earliest is best. This may or may not be the case; however, the permissibility of intervening in different ways at different stages of life is complex and turns on numerous contextual factors. We consider the particular ethical implications of intervening at different points in the life course, presenting a valuable resource for negotiating clinical and policy implications of EI in AD.

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Young people’s advisory groups in health research: scoping review and mapping of practices.

August 2, 2022. Posted in

Authors: Gabriela Pavarini

Background Young people’s advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs.

Method To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG.

Findings Of all studies that collected primary data from persons aged 12–18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs.

Interpretation Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

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