Tracing Tomorrow: young people's preferences and values related to use of personal sensing to predict mental health, using a digital game methodology.

BACKGROUND: Use of personal sensing to predict mental health risk has sparked interest in adolescent psychiatry, offering a potential tool for targeted early intervention. OBJECTIVES: We investigated the preferences and values of UK adolescents with regard to use of digital sensing information, including social media and internet searching behaviour. We also investigated the impact of risk information on adolescents' self-understanding. METHODS: Following a Design Bioethics approach, we created and disseminated a purpose-built digital game (www.tracingtomorrow.org) that immersed the player-character in a fictional scenario in which they received a risk assessment for depression Data were collected through game choices across relevant scenarios, with decision-making supported through clickable information points. FINDINGS: The game was played by 7337 UK adolescents aged 16-18 years. Most participants were willing to personally communicate mental health risk information to their parents or best friend. The acceptability of school involvement in risk predictions based on digital traces was mixed, due mainly to privacy concerns. Most participants indicated that risk information could negatively impact their academic self-understanding. Participants overwhelmingly preferred individual face-to-face over digital options for support. CONCLUSIONS: The potential of digital phenotyping in supporting early intervention in mental health can only be fulfilled if data are collected, communicated and actioned in ways that are trustworthy, relevant and acceptable to young people. CLINICAL IMPLICATIONS: To minimise the risk of ethical harms in real-world applications of preventive psychiatric technologies, it is essential to investigate young people's values and preferences as part of design and implementation processes.

Online peer-led intervention to improve adolescent wellbeing during the COVID-19 pandemic: a randomised controlled trial.

BACKGROUND: The COVID-19 pandemic and associated lockdown measures have posed a major risk to young people's wellbeing, which might be ameliorated by peer-led programmes. Using a randomised controlled trial (ISRCTN registry, number ISRCTN77941736 https://doi.org/10.1186/ISRCTN77941736 ), we tested the short-term efficacy of an online peer-led intervention designed to equip young people with skills to support their mental health and wellbeing during the COVID-19 pandemic. METHODS: Through schools and social media ads, we recruited one hundred young people (aged 16-18) in the UK, focusing on areas with the highest incidence of COVID cases. In December 2020, participants were randomly allocated (1:1) to immediate 5 day Coping during COVID course (n = 49) or a wait-list (n = 51) through a survey software automated randomisation tool. Our primary outcome was self-reported mental wellbeing, and secondary outcomes included self-reported social connectedness, coping skills, sense of purpose, self-esteem, and self-compassion. We also collected qualitative reports of participants' perceived impact of the course and intentions to use what they have learnt from the course in their life moving forward. Assessments were completed at baseline, 1 week post randomisation (primary endpoint), and 2-weeks post-randomisation. RESULTS: Young people allocated to the peer-led intervention reported significantly greater wellbeing, social connectedness, coping skills, sense of purpose, self-esteem, and self-compassion 1 week and 2 weeks post-randomisation (medium-large effect sizes). Specific benefits to mental health, sense of purpose and connectedness were also emphasised in qualitative reports. CONCLUSIONS: An online, peer-led intervention targeting youth wellbeing during the context of the COVID-19 pandemic brought benefits across a range of outcomes, suggesting that structured programmes that incorporate peer-to-peer support can be a valuable approach to promote young people's wellbeing and foster psychological resources during a health crisis.

Interdisciplinary perspectives on digital technologies for global mental health.

Digital Mental Health Technologies (DMHTs) have the potential to close treatment gaps in settings where mental healthcare is scarce or even inaccessible. For this, DMHTs need to be affordable, evidence-based, justice-oriented, user-friendly, and embedded in a functioning digital infrastructure. This viewpoint discusses areas crucial for future developments of DMHTs. Drawing back on interdisciplinary scholarship, questions of health equity, consumer-, patient- and developer-oriented legislation, and requirements for successful implementation of technologies across the globe are discussed. Economic considerations and policy implications complement these aspects. We discuss the need for cultural adaptation specific to the context of use and point to several benefits as well as pitfalls of DMHTs for research and healthcare provision. Nonetheless, to circumvent technology-driven solutionism, the development and implementation of DMHTs require a holistic, multi-sectoral, and participatory approach.

Flourishing, Mental Health Professionals and the Role of Normative Dialogue.

This paper explores the dilemma faced by mental healthcare professionals in balancing treatment of mental disorders with promoting patient well-being and flourishing. With growing calls for a more explicit focus on patient flourishing in mental healthcare, we address two inter-related challenges: the lack of consensus on defining positive mental health and flourishing, and how professionals should respond to patients with controversial views on what is good for them. We discuss the relationship dynamics between healthcare providers and patients, proposing that 'liberal' approaches can provide a pragmatic framework to address disagreements about well-being in the context of flourishing-oriented mental healthcare. We acknowledge the criticisms of these approaches, including the potential for unintended paternalism and distrust. To mitigate these risks, we conclude by suggesting a mechanism to minimize the likelihood of unintended paternalism and foster patient trust.

The Mystery of Mental Integrity: Clarifying Its Relevance to Neurotechnologies.

The concept of mental integrity is currently a significant topic in discussions concerning the regulation of neurotechnologies. Technologies such as deep brain stimulation and brain-computer interfaces are believed to pose a unique threat to mental integrity, and some authors have advocated for a legal right to protect it. Despite this, there remains uncertainty about what mental integrity entails and why it is important. Various interpretations of the concept have been proposed, but the literature on the subject is inconclusive. Here we consider a number of possible interpretations and argue that the most plausible one concerns neurotechnologies that bypass one's reasoning capacities, and do so specifically in ways that reliably lead to alienation from one's mental states. This narrows the scope of what constitutes a threat to mental integrity and offers a more precise role for the concept to play in the ethical evaluation of neurotechnologies.

Approaches to consent in public health research in secondary schools.

OBJECTIVES: We assess different approaches to seeking consent in research in secondary schools. DESIGN: We review evidence on seeking active versus passive parent/carer consent on participant response rates and profiles. We explore the legal and regulatory requirements governing student and parent/carer consent in the UK. RESULTS: Evidence demonstrates that requiring parent/carer active consent reduces response rates and introduces selection biases, which impact the rigour of research and hence its usefulness for assessing young people's needs. There is no evidence on the impacts of seeking active versus passive student consent but this is likely to be marginal when researchers are directly in communication with students in schools. There is no legal requirement to seek active parent/carer consent for children's involvement in research on non-medicinal intervention or observational studies. Such research is instead covered by common law, which indicates that it is acceptable to seek students' own active consent when they are judged competent. General data protection regulation legislation does not change this. It is generally accepted that most secondary school students age 11+ are competent to provide their own consent for interventions though this should be assessed individually. CONCLUSION: Allowing parent/carer opt-out rights recognises their autonomy while giving primacy to student autonomy. In the case of intervention research, most interventions are delivered at the level of the school so consent can only practically be sought from head teachers. Where interventions are individually targeted, seeking student active consent for these should be considered where feasible.

Merging Minds: The Conceptual and Ethical Impacts of Emerging Technologies for Collective Minds.

A growing number of technologies are currently being developed to improve and distribute thinking and decision-making. Rapid progress in brain-to-brain interfacing and swarming technologies promises to transform how we think about collective and collaborative cognitive tasks across domains, ranging from research to entertainment, and from therapeutics to military applications. As these tools continue to improve, we are prompted to monitor how they may affect our society on a broader level, but also how they may reshape our fundamental understanding of agency, responsibility, and other key concepts of our moral landscape. In this paper we take a closer look at this class of technologies - Technologies for Collective Minds - to see not only how their implementation may react with commonly held moral values, but also how they challenge our underlying concepts of what constitutes collective or individual agency. We argue that prominent contemporary frameworks for understanding collective agency and responsibility are insufficient in terms of accurately describing the relationships enabled by Technologies for Collective Minds, and that they therefore risk obstructing ethical analysis of the implementation of these technologies in society. We propose a more multidimensional approach to better understand this set of technologies, and to facilitate future research on the ethics of Technologies for Collective Minds.

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth.

LAY ABSTRACT: Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (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. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.

Agents of Change for Mental Health: A Survey of Young People's Aspirations for Participation Across Five Low- and Middle-Income Countries.

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.

Online peer support training to promote adolescents' emotional support skills, mental health and agency during COVID-19: Randomised controlled trial and qualitative evaluation.

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. Assessments were completed at baseline and 1 week post randomisation (primary endpoint), and up to 4 weeks post randomisation (training group only). The training increased support-giving skills, frequency of providing support, compassion and peer connectedness (medium-large-effect sizes), but not motivation to provide support, 1 week post randomisation, compared to controls. Gains in the training group were maintained 4 weeks post randomisation. Training also improved adolescents' mental health and agency, and qualitative reports revealed further positive outcomes including increased self-care and empowerment. Leveraging digital platforms that are familiar to young people, peer support training has the potential to enable adolescents to support their own and their peers' mental wellbeing during a health crisis.

Cognitive Enhancement and Social Mobility: Skepticism from India.

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.

Testing Design Bioethics Methods: Comparing a Digital Game with a Vignette Survey for Neuroethics Research with Young People.

BACKGROUND: Over the last decades, the neurosciences, behavioral sciences, and the social sciences have all seen a rapid development of innovative research methods. The field of bioethics, however, has trailed behind in methodological innovation. Despite the so-called "empirical turn" in bioethics, research methodology for project development, data collection and analysis, and dissemination has remained largely restricted to surveys, interviews, and research papers. We have previously argued for a "Design Bioethics" approach to empirical bioethics methodology, which develops purpose-built methods for investigation of bioethical concerns. In this paper we compare a research tool created using a design bioethics approach to a "methods-as-usual" approach in empirical bioethics. METHODS: Our study compared dimensions of engagement with a digital game we created, called "Tracing Tomorrow," to a standard vignette survey. The two tools investigated the same subject matter, digital phenotyping for mental health, in a sample of 301 UK adolescents. RESULTS: Participants who played the game reported a greater sense of presence, emotional engagement, cognitive absorption, and mental health ethics insight, compared to participants who completed the vignette survey. Perceived authenticity and curiosity/motivation to learn more was equivalent for both methods. CONCLUSION: The results of this study highlights the importance of purpose-built methodology for empirical bioethics research.

Race and resource allocation: an online survey of US and UK adults' attitudes toward COVID-19 ventilator and vaccine distribution.

OBJECTIVE: This study aimed to assess US/UK adults' attitudes towards COVID-19 ventilator and vaccine allocation. DESIGN: Online 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). INTERVENTIONS: Participants were asked to allocate ventilators or vaccines in scenarios involving individuals or groups with different medical risk and additional risk factors. RESULTS: Participant 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 ventilator (UK BAME participants: 22.1%). For patients with identical risk of severe COVID-19, 43.6% allocated a vaccine to a minority patient, 7.2% chose a white patient and 49.2% chose a coin toss. When the racial minority patient had a 10% lower risk of severe COVID-19, 23.7% participants allocated the vaccine to the minority patient. Similar results were seen for obesity or male sex as additional risk factors. In both countries, responses on the Modern Racism Scale were strongly associated with attitudes toward race-based ventilator and vaccine allocations (p<0.0001). CONCLUSIONS: Although living in countries with high racial inequality during a pandemic, most US and UK adults in our survey allocated ventilators and vaccines preferentially to those with the highest chance of survival or highest chance of severe illness. Race of recipient led to vaccine prioritisation in cases where risk of illness was similar.

Co-production to understand online help-seeking for young people experiencing emotional abuse and neglect: Building capabilities, adapting research methodology and evaluating involvement and impact.

BACKGROUND: Involving 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. OBJECTIVES: This 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. METHODS: During 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 digital feedback, reflective practices and multiple dissemination outputs are used to evaluate the impact of the study on those involved and the research. RESULTS: Ten members of NeurOX Young People's Advisory Group were involved in the core project. Additional members were invited at later stages and in the dissemination of outputs. We describe a supportive, scaffolded learning approach to build capabilities and embed the lived experience of YCoR in complex qualitative research. A digital blended approach was acceptable to YCoR, principles of co-production were met and the impact/benefits of involvement are described. To demonstrate the epistemological value of involving YP we evidence YPs capabilities for involvement and the 'change' or contribution YCoR made to the research through reflective practices. CONCLUSIONS: This case study demonstrates how flexible approaches co-production with YCoR can be robust and responsive to balance ethical and epistemological impact in complex mental health research. Supportive, scaffolded practices and safe environments helped build the confidence and capacity of YCoRs to demonstrate valuable phenomenological insights in the analysis. YP's perspectives on how they describe 'meaningful' and impactful involvement illustrate the reciprocal benefits gained through working together. PUBLIC CONTRIBUTION: This case study describes the YCoR involvement throughout the research and dissemination of outputs. YCoR co-authors were involved in developing the outline and reviewing the draft stages of the manuscript.

Neuroenhancements in the Military: A Mixed-Method Pilot Study on Attitudes of Staff Officers to Ethics and Rules.

Utilising science and technology to maximize human performance is often an essential feature of military activity. This can often be focused on mission success rather than just the welfare of the individuals involved. This tension has the potential to threaten the autonomy of soldiers and military physicians around the taking or administering of enhancement neurotechnologies (e.g., pills, neural implants, and neuroprostheses). The Hybrid Framework was proposed by academic researchers working in the U.S. context and comprises "rules" for military neuroenhancement (e.g., ensuring transparency and maintaining dignity of the warfighter). Integrating traditional bioethical perspectives with the unique requirements of the military environment, it has been referenced by military/government agencies tasked with writing official ethical frameworks. Our two-part investigation explored the ethical dimensions of military neuroenhancements with military officers - those most likely to be making decisions in this area in the future. In three workshops, structured around the Hybrid Framework, we explored what they thought about the ethical issues of enhancement neurotechnologies. From these findings, we conducted a survey (N = 332) to probe the extent of rule endorsement. Results show high levels of endorsement for a warfighter's decision-making autonomy, but lower support for the view that enhanced warfighters would pose a danger to society after service. By examining the endorsement of concrete decision-making guidelines, we provide an overview of how military officers might, in practice, resolve tensions between competing values or higher-level principles. Our results suggest that the military context demands a recontextualisation of the relationship between military and civilian ethics. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12152-022-09490-2.

Data sharing in the age of predictive psychiatry: an adolescent perspective.

BACKGROUND: Advances 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. OBJECTIVES: This 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. METHODS: Eighty 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. FINDINGS: Participants saw multiple benefits in predictive testing services, but were highly selective with regard to the type of data they were willing to share. Largely due to privacy concerns, digital data sources such as social media or Google search history were less likely to be shared than psychosocial and biological data, including school grades and one's DNA. Participants were particularly reluctant to share social media data with schools (but less so with health systems). CONCLUSIONS: Emerging predictive psychiatric services are valued by young people; however, these services must consider privacy versus utility trade-offs from the perspective of different stakeholders, including adolescents. CLINICAL IMPLICATIONS: Respecting adolescents' need for transparency, privacy and choice in the age of digital phenotyping is critical to the responsible implementation of predictive psychiatric services.