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.

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.

How to build a game for empirical bioethics research: The case of 'Tracing Tomorrow'.

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. PATIENT OR PUBLIC CONTRIBUTION: In planning and conducting this study, we consulted with young people from a diverse range of backgrounds, including the NeurOX Young People's Advisory Group, the What Lies Ahead Junior Researchers Team, Censuswide youth participants and young people from the Livity Youth Network.

Governing AI-Driven Health Research: Are IRBs Up to the Task?

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.

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.

PURPOSE: Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services. METHODS: Thirty-one grandchildren of people with LOAD, aged 16-26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD. RESULTS: Even though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option. CONCLUSION: While DTC genetic companies often market their services as a "fun consumer product", DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.

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

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.

The Effect of Moral Congruence of Calls to Action and Salient Social Norms on Online Charitable Donations: A Protocol Study.

Online advertising is an important tool that can be utilized by charities to elicit attention and funding. A critical examination of advertisement strategies is thus necessary to increase the efficacy of fundraising efforts. Previous studies have shown that individuals' moral views and perceptions of social norms can play important roles in charitable behavior. Thus, the current protocol describes a study to examine whether framing charitable advertisements in line with participants' morality and increasing the salience of descriptive social norms increases subsequent charitable behavior. We describe experimental, online methods, whereby participants are provided with a framed call-to-action and normative information within a custom-developed application or existing survey platform. Furthermore, in the exploratory fashion, we discuss the possibility of collecting participants' Facebook data and predicting moral profiles from this data. If there is an increased rate of donations as a result of moral compatibility and/or increased norm salience, charities can leverage this knowledge to increase the donations by tailoring their campaigns in a more appealing way for their prospective donors. Moreover, if it turns out to be possible to predict one's moral profile from Facebook footprints, charities can use this knowledge to find and target people that are more likely to support their cause. However, this introduces important ethical questions that are discussed within this protocol.

Positive thinking elevates tolerance: Experimental effects of happiness on adolescents' attitudes toward asylum seekers.

Inducing emotional reactions toward social groups can influence individuals' political tolerance. This study examines the influence of incidental fear and happiness on adolescents' tolerant attitudes and feelings toward young Muslim asylum seekers. In our experiment, 219 16- to 21-year-olds completed measures of prejudicial attitudes. After being induced to feel happiness, fear, or no emotion (control), participants reported their tolerant attitudes and feelings toward asylum-seeking young people. Participants assigned to the happiness condition demonstrated more tolerant attitudes toward asylum-seeking young people than did those assigned to the fear or control conditions. Participants in the control condition did not differ from participants in the fear condition. The participants in the happiness condition also had more positive feelings toward asylum-seeking young people than did participants in the control condition. The findings suggest that one way to increase positive attitudes toward asylum-seeking young people is to improve general emotional state.