Publications

Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives.

September 10, 2018. Posted in

Authors: Ilina Singh

Increasingly, national governments across the globe are prioritizing investments in neuroscience. Currently, seven active or in-development national-level brain research initiatives exist, spanning four continents. Engaging with the underlying values and ethical concerns that drive brain research across cultural and continental divides is critical to future research.

Culture influences what kinds of science are supported and where science can be conducted through ethical frameworks and evaluations of risk. Neuroscientists and philosophers alike have found themselves together encountering perennial questions; these questions are engaged by the field of neuroethics, related to the nature of understanding the self and identity, the existence and meaning of free will, defining the role of reason in human behavior, and more. With this Perspective article, we aim to prioritize and advance to the foreground a list of neuroethics questions for neuroscientists operating in the context of these international brain initiatives.

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The moralization of the body: Protecting and expanding the boundaries of the self

June 10, 2018. Posted in

Authors: Gabriela Pavarini

How is morality revealed in the body? Protecting the body coincides with a desire to keep resources for the self, whereas breaking these boundaries (e.g., through physical touch) coincides with a desire to share with others. At its essence, morality can be viewed as concerning resource allocation. “Being moral” normally refers to the willingness to allocate personal resources to others. This includes helping others achieve their goals, comforting them, and sharing valuable goods such as food and information. Therefore, a substantial part of our everyday morality involves decisions on whether to keep our psychological, physical, and material resources to ourselves or, instead, give them away. For social life to be sustainable, human groups develop a shared understanding of who possesses what and the extent to which these resources are distributed and shared. In the present chapter we demonstrate how the negotiation of psychological and material resources with others is grounded in processes of the physical body, such as those that support disease avoidance. In what follows, we discuss the historical roots of our approach, its theoretical standpoint, and the accruing empirical evidence in support of it.

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Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism.

April 10, 2018. Posted in

Authors: Ilina Singh

BACKGROUND: Guidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.

OBJECTIVE: Our objective was to scrutinize patient and public involvement (PPI) by a pan-European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research.

SETTING, PARTICIPANTS AND ANALYSIS: Two public events, one in the UK and one in Denmark were conducted as part of the consortium’s on-going PPI activities in 2014 and 2015. Sixty-six individuals submitted written comments on the consortium’s research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.

RESULTS: The themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co-occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on-going.

DISCUSSION: This case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue.

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Parental Responsibility in the Context of Neuroscience and Genetics

February 14, 2018. Posted in

Authors: Arianna Manzini, Ilina Singh

Parental Responsibility in the Context of Neuroscience and Genetics, by Kristien Hens, Daniela Cutas, and Dorothee Horstkötter. Cham, Switzerland: Springer International Publishing; 2017. 246 pp.

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What constitutes ‘good practice’ in early intervention for psychosis? Analysis of clinical guidelines

February 14, 2018. Posted in

Authors: Ilina Singh

Early Intervention in Psychosis (EIP) services have been implemented with the dual aims of preventing harmful outcomes associated with early-onset psychosis and improving prognosis. However, concerns have been raised regarding the ethical implications of involving young people in EIP services. One way to ensure high ethical standards and promote good practice in EIP delivery is through governance of clinical practice. This study aimed to investigate the normative dimensions of good practice in EIP through examination of clinical guideline documents published in England over the past 15 years.

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Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits

December 11, 2017. Posted in

Authors: Arianna Manzini

Predictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial role in favour of predictive testing for other conditions, little research has explored such a role in psychiatric disorders. This paper outlines the potential non-medical benefits and harms of psychiatric genetic testing in minors in order to consider whether the non-medical benefits could ever make such testing appropriate. Five non-medical themes arise in the literature: psychological impacts, autonomy/self-determination, implications of the biomedical approach, use of financial and intellectual resources, and discrimination. Non-medical benefits were prominent in all of them, suggesting that psychiatric genetic testing in minors may be appropriate in some circumstances. Further research needs to empirically assess these potential non-medical benefits, incorporate minors in the debate, and include normative reflection to evaluate the very purposes and motivations of psychiatric genetic testing in minors.

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Towards a Moral Ecology of Pharmacological Cognitive Enhancement in British Universities

July 6, 2017. Posted in

Authors: Ilina Singh

Few empirical studies in the UK have examined the complex social patterns and values behind quantitative estimates of the prevalence of pharmacological cognitive enhancement (PCE). We conducted a qualitative investigation of the social dynamics and moral attitudes that shape PCE practices among university students in two major metropolitan areas in the UK. Our thematic analysis of eight focus groups (n = 66) suggests a moral ecology that operates within the social infrastructure of the university.

We find that PCE resilience among UK university students is mediated by normative and cultural judgments disfavoring competitiveness and prescription drug taking. PCE risk can be augmented by social factors such as soft peer pressure and normalization of enhancement within social and institutional networks. We suggest that moral ecological dynamics should be viewed as key mechanisms of PCE risk and resilience in universities. Effective PCE governance within universities should therefore attend to developing further understanding of the moral ecologies of PCE.

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ADHD in the United Kingdom: Conduct, Class, and Stigma

June 10, 2017. Posted in

Authors: Ilina Singh

If attention deficit/hyperactivity disorder (ADHD) in the United Kingdom were a word cloud that attempted to capture its status as a social object, it would be characterized most prominently by a bold assemblage of biological and developmental research and researchers, intertwined with national guidelines and epidemiological reports. The pharmaceutical industry, health economics-related terms, and media reports would appear in smaller, lesser font caught up within this bold assemblage in a minor way. Smallest of all, elements related to ADHD as a lived experience would be (if we imagine this to be a three-dimensional word cloud) sucked into the vortex of the assemblage, a tiny object in the depths of a black hole. These elements and this configuration make up ADHD in the United Kingdom in the early 21st century.

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Review and revision of the Research for Humanitarian Crises (R2HC) Ethics Framework

March 1, 2017. Posted in

Authors: Sapfo Lignou

In late 2016, Elrha commissioned a review, revision and update of the R2HC Ethical Framework by Curry, Waldman and Caplan. The revision and update consisted of: a desk-based review of the existing framework and feedback on its use, a literature review, an online survey and a stakeholder consultation. Based on cumulative findings from this work, a revised and updated framework is proposed here.

This new framework was developed to provide: a) ethical guidance specifically for humanitarian health research, but with wider relevance for other humanitarian research and potentially even humanitarian practice; b) a tool which encourages reflection, inductive and deliberative thinking and proactive response to ethical issues that arise in developing protocols, reviewing proposals and conducting humanitarian health research; c) interconnected, overlapping and repeated opportunities for reflection on ethical challenges based on an assumption that these reflections are guided by context specific factors; d) a tool which has been developed through a firm grounding of the belief that reflection on ethical issues should be done throughout research projects, including before, during and after the research; e) a user-friendly, stand-alone tool, easily detachable from other accompanying literature. T

he new version of the R2HC Ethics Framework is graphically presented as a series of ‘steps’ without any hierarchical relationships. An explanatory section precedes the graphical framework to act as guidance for its usage and formative structure.

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Current model infrastructure and responsivity

February 10, 2017. Posted in

Authors: Sapfo Lignou

The purpose of the narrative reviews was to explore key issues of children’s primary care focusing specifically on the primary-secondary care interface and its impact on the quality, safety and timeliness of care.

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