| Literature DB >> 34713953 |
David M Lyreskog1,2, Gabriela Pavarini1,2, Jessica Lorimer1, Edward Jacobs1,2, Vanessa Bennett1, Ilina Singh1,2.
Abstract
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.Entities:
Keywords: big data; coproduction; digital bioethics; mental health; predictive testing; young people
Mesh:
Year: 2021 PMID: 34713953 PMCID: PMC8849238 DOI: 10.1111/hex.13380
Source DB: PubMed Journal: Health Expect ISSN: 1369-6513 Impact factor: 3.318
Figure 1A systematic method of developing a game for bioethics research
Figure 2Youth involvement strategy (The NeuroOX YPAG is a group of approximately 45 young people (aged 14–18) that collaborates with researchers on mental health ethics and methods; The What Lies Ahead Youth Team is a team of seven junior researchers from across Europe conducting research in mental health ethics; Censuswide is a research company with an extensive network of young people; and The Livity Youth Network is a group of young people who work as consultants for the London‐based bureau Livity.)
Key findings from the qualitative stakeholder consultation session
| Relatability | Participants expressed a preference for playing as a young person—who had themselves received a risk assessment or whose friend had—rather than an adult, e.g., on a school board or in charge of a predictive testing service |
| ‘I don't like the idea of being an older person in charge of younger people’ (Harriet, 17) | |
| There was significant support for setting the subject matter in a relatable, realistic context that all users would be familiar with: school, home or the digital environment of their phone | |
| ‘School is just a cliche setting but it's relatable to everyone, everyone gets it’ (Matthew, 18) | |
| Relatability also drove a preference to explore the ethical consequences of using digital/social media tracking information, rather than results of genetic testing | |
| ‘Everyone can relate to it [social media tracking]’ (Joanna, 16) | |
| Participants felt it best to focus on one of a smaller number of mental health difficulties that they found particularly relevant—stress problems, anxiety problems and depressed mood—rather than addressing multiple conditions at a more superficial level | |
| ‘I know friends who have told their parents about their anxiety or depression and their parents didn't believe them’ (Tanya, 17) | |
| ‘Anxiety and depression can just be seen as attention seeking, so good to go deeper on these’ (Hasham, 17) | |
| Ethical | Matters of identity—how young people see themselves and are seen by others—and privacy were seen as particularly important when considering digital phenotyping and mental health risk: Digital behaviours online were seen as more deeply personal and private than biomarkers |
| ‘Privacy is a big thing for young people’ (Isaac, 17) | |
| Although participants recognized that giving away data is a common occurrence in exchange for access to online content, transparency about data collection and anonymity was seen as crucial | |
| ‘Make it clear it's being used for research that is going to help people… [that] it's anonymous and not being sent to your school or teachers’ (Anna, 17) |
Figure 3Young people's views on the relevance of different mental health challenges and ethically relevant themes to explore
Figure 4Example choice for the Trust theme
Figure 5Example choice for the Knowledge & Support theme
Figure 6Example choice for Identity theme
Figure 7Example scenario for the Normative disposition subtheme
Figure 8Example of a social media marketing asset