Jessica Lorimer

Position: DPhil Student

University of Oxford Profile

Email: jessica.lorimer@psych.ox.ac.uk

Project(s): Becoming Good: Early Intervention and Moral Development in Psychiatry (BeGOOD)

Publications

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

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  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.

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  Gamifying bioethics

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

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

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  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.

  Keywords: child & adolescent psychiatry.

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

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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 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.