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Abstract The attempt to identify individuals at the very early stages of psychotic illness, before they suffer from a psychotic episode, has clinical, ethical, and social implications. In this chapter, we provide an overview of the... more
Abstract The attempt to identify individuals at the very early stages of psychotic illness, before they suffer from a psychotic episode, has clinical, ethical, and social implications. In this chapter, we provide an overview of the ethical issues that arise from the attempt to identify and treat psychosis risk. We organize such concerns around four questions: (i) What are the ethical implications of the attempt to predict psychosis? (ii) What ethical issues arise in the assessment of psychosis risk? (iii) How should psychosis risk be communicated to healthy or help-seeking individuals? (iv) What kind of interventions ought to be offered based on psychosis risk? We argue that these questions should be kept in mind by relevant stakeholders, in order to promote critical reflection on viable solutions in research and clinical efforts. Lastly, we outline some potentially harmful overlaps between the logic of risk in psychosis prediction and the logic of risk in mental health legislation.
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Background: Young people have the potential to be effective agents within their communities, and can play a critical role in promoting their peers’ mental health and well-being. But do young people feel a sense of agency and... more
Background: Young people have the potential to be effective agents within their communities, and can play a critical role in promoting their peers’ mental health and well-being. But do young people feel a sense of agency and responsibility towards promoting their peers’ mental health and well-being? This co-produced study mapped how Brazilian young people perceived their role in promoting their peers’ mental health and well-being, as well as perceived barriers to their engagement. Methods: Participants were 46 Brazilian adolescents aged between 15 and 18 years old, recruited primarily via social media. Data were collected via focus groups and individual interviews conducted by a youth collaborator and a senior researcher. Anonymised transcripts were analysed through a reflexive thematic analysis that generated four themes. Results: Two themes report on young people’s sense of agency and responsibility and the strategies they use to promote their peers’ mental health and well-being. ...
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The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol,... more
The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how the...
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Cognitive enhancement (CE) covers a broad spectrum of methods, including behavioral techniques, nootropic drugs, and neuromodulation interventions. However, research on their use in children has almost exclusively been carried out in... more
Cognitive enhancement (CE) covers a broad spectrum of methods, including behavioral techniques, nootropic drugs, and neuromodulation interventions. However, research on their use in children has almost exclusively been carried out in high-income countries with limited understanding of how experts working with children view their use in low- and middle- income countries (LMICs). This study examines perceptions on cognitive enhancement, their techniques, neuroethical issues about their use from an LMICs perspective.Seven Indian experts were purposively sampled for their expertise in bioethics, child development and child education. In-depth interviews were conducted using a semi-structured topic guide to examine (1) understanding of CE, (2) which approaches were viewed as cognitive enhancers, (3) attitudes toward different CE techniques and (4) neuroethical issues related to CE use within the Indian context. All interviews were audio recorded and transcribed before thematic analysis.Findings indicate Indian experts view cognitive enhancement as a holistic positive impact on overall functioning and well-being, rather than improvement in specific cognitive abilities. Exogenous agents, and neuromodulation were viewed with skepticism, whereas behavioral approaches were viewed more favorably. Neuroethical concerns included equitable access to CE, limited scientific evidence and over-reliance on technology to address societal problems. This highlights the need for more contextually relevant neuroethics research in LMICs.
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ABSTRACT
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Background: Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a pilot randomised controlled trial (ISCRN registry,... more
Background: Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a pilot randomised controlled trial (ISCRN registry, number ISRCTN99248812), we tested the efficacy of an online training programme designed to equip young people with skills to support to their peers’ mental wellbeing during the COVID-19 pandemic. Methods: We recruited one hundred young people (aged 16-18) living in the UK, through social media advertisements. In June 2020, participants were randomly allocated (1:1) to immediate 5-day peer support training (n=50) or a wait-list (n=50) via an independently generated allocation sequence. Primary outcomes were indicators of ability to help others (motivation, perceived skills, frequency of help provided, compassion to others and connectedness to peers). Secondary outcomes included emotional symptoms, mental wellbeing, and indicators of agency (civic eng...
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ObjectiveThis study aimed to assess US/UK adults’ attitudes towards COVID-19 ventilator and vaccine allocation.DesignOnline survey including US and UK adults, sampled to be representative for sex, age, race, household income and... more
ObjectiveThis study aimed to assess US/UK adults’ attitudes towards COVID-19 ventilator and vaccine allocation.DesignOnline survey including US and UK adults, sampled to be representative for sex, age, race, household income and employment. A total of 2580 participated (women=1289, age range=18 to 85 years, Black American=114, BAME=138).InterventionsParticipants were asked to allocate ventilators or vaccines in scenarios involving individuals or groups with different medical risk and additional risk factors.ResultsParticipant race did not impact vaccine or ventilator allocation decisions in the USA, but did impact ventilator allocation attitudes in the UK (F(4,602)=6.95, p<0.001). When a racial minority or white patient had identical chances of survival, 14.8% allocated a ventilator to the minority patient (UK BAME participants: 24.4%) and 68.9% chose to toss a coin. When the racial minority patient had a 10% lower chance of survival, 12.4% participants allocated them the ventila...
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BackgroundInvolving young people (YP) as co‐researchers (YCoR) in mental health research is important for ethical and epistemological reasons. However, approaches to involve and evaluate ‘meaningful involvement’ in complex qualitative... more
BackgroundInvolving young people (YP) as co‐researchers (YCoR) in mental health research is important for ethical and epistemological reasons. However, approaches to involve and evaluate ‘meaningful involvement’ in complex qualitative mental health research, and how to evaluate impacts (or change) for the co‐researcher and the research is less well defined.ObjectivesThis co‐produced research explored the experiences of YP seeking help for emotional abuse and neglect via an online, peer‐peer message board. This practical case study aims to evidence the meaningful role and impacts associated with YCoR involvement in sensitive and complex mental health research using a flexible approach to co‐production.MethodsDuring the Covid‐19 pandemic, we explored on‐ and off‐line approaches and adapted research methodology to build relationships, knowledge, skills, and confidence with YCoR. The virtual involvement was evaluated against the five principles of co‐production. Anonymous, continuous di...
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BackgroundAdvances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical... more
BackgroundAdvances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy.ObjectivesThis study aimed to investigate young people’s interest in predictive testing for mental health challenges and their attitudes towards sharing biological, psychosocial and digital data for such purpose.MethodsEighty UK adolescents aged 16–18 years took part in a digital role-play where they played the role of clients of a fictional predictive psychiatry company and chose what sources of personal data they wished to provide for a risk assessment. After the role-play, participants reflected on their choices during a peer-led interview.FindingsParticipants saw multiple benefits in predictive testing services, but were highly selective with regard to the type of data they were willing...
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PURPOSE Effective intervention, policy, and research in mental health and well-being (MHWB) require young people to be understood not only as beneficiaries, but also as active agents in codesigning and implementing initiatives. To... more
PURPOSE Effective intervention, policy, and research in mental health and well-being (MHWB) require young people to be understood not only as beneficiaries, but also as active agents in codesigning and implementing initiatives. To identify pathways for young people's participation in promoting MHWB in low- and middle-income countries (LMICs), this study surveyed young people's aspirations for engagement, their spheres of influence, capacity building needs, and key barriers to participation. METHODS Using U-Report, United Nations Children's Emergency Fund's social messaging tool and data collection platform, we distributed a short quantitative survey to a nonrepresentative, but large sample of young people aged 15-29 across five LMICs: Nigeria, Brazil, Jamaica, South Africa, and Burundi. RESULTS A total of 42,689 young people responded, with representation from most or all provinces within each country. Participants' average age was 23.8 years (SD = 3.77). Young people's core aspirations were to join a mental health awareness project and to support their peers. Participants considered schools and community settings to be the most important spheres for engagement. Lack of information about mental health was the main perceived barrier to participation, and mental health classes the main training need. DISCUSSION In many countries, MHWB is not taught or discussed in schools and youth-led mental health interventions are rare. Findings from this study reveal clear aspirations for participatory engagement to promote MHWB among young people in LMICs. To support meaningful participation, policymakers and youth service providers must ensure that young people have access to mental health literacy training and opportunities to raise awareness in schools or community settings.
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Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a randomised controlled trial (ISRCTN99248812, 28/05/2020), we... more
Adolescents often look to their peers for emotional support, so it is critical that they are prepared to take on a supportive role, especially during a health crisis. Using a randomised controlled trial (ISRCTN99248812, 28/05/2020), we tested the short-term efficacy of an online training programme to equip young people with skills to support to their peers’ mental wellbeing during the COVID-19 pandemic. In June 2020, one-hundred UK adolescents (aged 16–18) recruited through social media were randomly allocated (1:1) to immediate 5-day peer support training or a wait-list, via an independently generated allocation sequence. Primary outcomes were indicators of ability to help others (motivation, perceived skills, frequency of help provided, compassion to others and connectedness to peers). Secondary outcomes included emotional symptoms, mental wellbeing, and indicators of agency (civic engagement and self-efficacy). We also collected qualitative reports of participants’ experience. As...
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Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine... more
Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of publi...
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It is becoming increasingly clear that the field of empirical bioethics requires methodological innovations that can keep up with the scale and pace of contemporary research in health and medicine. With that in mind, we have recently... more
It is becoming increasingly clear that the field of empirical bioethics requires methodological innovations that can keep up with the scale and pace of contemporary research in health and medicine. With that in mind, we have recently argued for Design Bioethics—the use of purpose‐built, engineered research tools that allow researchers to investigate moral decision‐making in ways that are embodied and contextualized. In this paper, we outline the development, testing and implementation of a novel prototype tool in the Design Bioethics Workshop—with each step illustrated with collected data. Titled ‘Tracing Tomorrow’ (www.tracingtomorrow.org), the tool is a narrative game to investigate young people's values and preferences in the context of digital phenotyping for mental health. The process involved (1) Working with young people to discover, validate and define the morally relevant cases or problems, (2) Building and testing the game concept in collaboration with relevant groups and game developers, (3) Developing prototypes that were tested and iterated in partnership with groups of young people and game developers and (4) Disseminating the game to young people to collect data to investigate research questions. We argue that Design Bioethics yields tools that are relevant, representative and meaningful to target populations and provide improved data for bioethics analysis.
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Background: In the UK, medical cannabis was approved in November 2018, leading many patients to believe that the medicine would now be available on the NHS. Yet, to date, there have been only 12 NHS prescriptions and less than 60... more
Background: In the UK, medical cannabis was approved in November 2018, leading many patients to believe that the medicine would now be available on the NHS. Yet, to date, there have been only 12 NHS prescriptions and less than 60 prescriptions in total. In marked contrast, a recent patient survey by the Centre for Medical Cannabis (Couch, 2020) found 1.4 m people are using illicit cannabis for medical problems. Aims: Such a mismatch between demand and supply is rare in medicine. This article outlines some of the current controversies about medical cannabis that underpin this disparity, beginning by contrasting current medical evidence from research studies with patient-reported outcomes. Outcomes: Although definite scientific evidence is scarce for most conditions, there is significant patient demand for access to medical cannabis. This disparity poses a challenge for prescribers, and there are many concerns of physicians when deciding if, and how, to prescribe medical cannabis whic...
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BackgroundIn many countries, a young person who seeks medical care is not authorised to consent to their own assessment and treatment, yet the same child can be tried for a criminal offence. The absence of child and adolescent mental... more
BackgroundIn many countries, a young person who seeks medical care is not authorised to consent to their own assessment and treatment, yet the same child can be tried for a criminal offence. The absence of child and adolescent mental health legislation in most countries exacerbates the issues young people face in independently accessing mental healthcare. Countries with existing legislation rarely define a minimum age for mental health consent (MAMHC). In stark contrast, nearly all 196 nations studied maintain legislation defining a minimum age of criminal responsibility (MACR).ObjectiveThis review highlights inconsistent developmental and legal perspectives in defined markers of competency across medical and judicial systems.MethodsA review of the MAMHC was performed and compared with MACR for the 52 countries for which policy data could be identified through publicly available sources.FindingsOnly 18% of countries maintain identifiable mental health policies specific to children’s...
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This chapter defends that over time, stimulants and other neuroenhancers will increasingly be used to enhance young people’s cognitive and behavioural functioning, alongside growing general public acceptability of neuroenhancers as tools... more
This chapter defends that over time, stimulants and other neuroenhancers will increasingly be used to enhance young people’s cognitive and behavioural functioning, alongside growing general public acceptability of neuroenhancers as tools to improve academic, social and workplace performance. The chapter focuses on the most common current neuroenhancers used in young people – stimulant drugs. The chapter outlines the key social and ethical concerns raised by the use of stimulant drugs for enhancement in young people, and makes specific research, practice and policy recommendations. The chapter also suggests a rationale for clinical management of psychotropic neuroenhancers in young people, attending closely to the necessary boundaries on such practice asserted by structural and clinical factors, as well as by potential ethical conflicts. This outline and the subsequent rationale for management focuses on stimulants, but it can serve as a template for novel neuroenhancers that reach t...
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<p>*<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0105969#pone-0105969-t003" target="_blank">Table 3</a> contains synthesized information from two questions. Prevalence – based... more
<p>*<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0105969#pone-0105969-t003" target="_blank">Table 3</a> contains synthesized information from two questions. Prevalence – based on the six options listed – and purposes, focusing on PCE. Respondents could choose from 17 other purposes besides PCE; a subset of the data on other purposes is reported in <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0105969#pone-0105969-t004" target="_blank">Table 4</a>. ‘PCE use’ was defined as a respondent who indicated PCE alone or in any combination; ‘other use’ was defined as a respondent who did not indicate PCE, but did indicate any other purpose.</p><p><b>S</b>mart Drug Prevalence (n = 877).<sup><a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0105969#nt101" target="_blank">*</a></sup></p
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Alzheimer’s disease (AD) research, treatment, and prevention focus increasingly on developing personalised interventions based on personal genetic, biological, phenotypic data, for early intervention (EI) to limit harm. This approach has... more
Alzheimer’s disease (AD) research, treatment, and prevention focus increasingly on developing personalised 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 analyse 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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Opportunities to communicate first-person perspectives are essential for self-determination. However, many autistic youth are excluded from sharing their perspectives, specifically those who are minimally verbal or with lower intellectual... more
Opportunities to communicate first-person perspectives are essential for self-determination. However, many autistic youth are excluded from sharing their perspectives, specifically those who are minimally verbal or with lower intellectual functioning. Current challenges to capturing their voices include a lack of appropriate inclusive methodologies. Propose an inclusive strength-oriented method to capture first-person perspectives of autistic adolescents. Our protocol ("Autism Voices") includes a pre-interview survey and semi-structured interview using universal design strategies. It was piloted with 33 participants who were representative of diverse language and cognitive abilities. A coding scheme was developed to identify communicative acts used by participants and mitigation strategies used by interviewers to enhance communication. Interviewer strategies that enhanced communication included question formulation, use of pictures, offering various output modalities, and ...
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In this article, I examine children’s reported experiences with stimulant drug treatments for attention deficit hyperactivity disorder in light of bioethical arguments about the potential threats of psychotropic drugs to authenticity and... more
In this article, I examine children’s reported experiences with stimulant drug treatments for attention deficit hyperactivity disorder in light of bioethical arguments about the potential threats of psychotropic drugs to authenticity and moral agency. Drawing on a study that involved over 150 families in the USA and the UK, I show that children are able to report threats to authenticity, but that the majority of children are not concerned with such threats. On balance, children report that stimulants improve their capacity for moral agency, and they associate this capacity with an ability to meet normative expectations. I argue that although under certain conditions stimulant drug treatment may increase the risk of a threat to authenticity, there are ways to minimise this risk and to maximise the benefits of stimulant drug treatment. Medical professionals in particular should help children to flourish with stimulant drug treatments, in good and in bad conditions.
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Scientific understanding of genetically driven, neurobiological pathways that contribute to diverse developmental outcomes in children has advanced considerably in the past decade. As knowledge accumulates, various aspects of a child's... more
Scientific understanding of genetically driven, neurobiological pathways that contribute to diverse developmental outcomes in children has advanced considerably in the past decade. As knowledge accumulates, various aspects of a child's health, wellbeing, and even character, are increasingly framed as amenable to external control, through pharmacological, behavioural or genetic interventions. The mere possibility of external control of these outcomes in children raises the responsibility bar for parents and other caregivers whose decisions and actions moderate children's quality of life both now and in the future. This is the key and important insight that drives the edited collection under review. Its diverse authors successfully illustrate how new challenges and opportunities posed by advances in neuroscience and genetics may change the content of established parental responsibilities, and may even give rise to entirely new obligations for parents and for society.