Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.

August 2, 2022. Posted in

Authors: Alex McKeown, Mark Harrison, Ilina Singh

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 public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.

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Design Bioethics: A Theoretical Framework and Argument for Innovation in Bioethics Research.

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Ilina Singh

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose “design bioethics” as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital tools can engender situated engagement with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by “design bioethics” could offer unique insights into new and familiar normative and empirical issues in the field.

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Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.

August 2, 2022. Posted in

Authors: Ilina Singh, Sapfo Lignou


Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research.


This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact.


While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts.


We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.

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

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Jessica Lorimer, Ilina Singh

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

August 2, 2022. Posted in

Authors: Gabriela Pavarini, Vanessa Bennett, Ilina Singh

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.

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

August 2, 2022. Posted in

Authors: Eddie Jacobs, Ilina Singh

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.

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

August 2, 2022. Posted in

Authors: Gabriela Pavarini, David Lyreskog, Jessica Lorimer, Eddie Jacobs, Vanessa Bennett, Ilina Singh

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’ (, 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.

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Debate: Promoting capabilities for young people’s agency in the COVID-19 outbreak.

August 13, 2020. Posted in

Authors: Gabriela Pavarini, Kiran Manku, David Lyreskog, Rosemary Musesengwa, Ilina Singh

The COVID‐19 pandemic is having a pervasive effect on young people’s mental health and well‐being, giving rise to feelings of deep uncertainty and lack of control. Inspired by Amartya Sen’s capabilities framework, we argue that building capacity and creating opportunities for community and civic engagement during this time will help young people gain agency and well‐being. We highlight two key areas for participatory engagement: coproduction of research, and peer‐led interventions. Providing capabilities for young people’s agency not only builds personal resilience, but also strengthens the quality of our research, interventions and overall response to the global health crisis.

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Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia

August 6, 2020. Posted in

Authors: David Lyreskog

Philosophers and clinicians struggle with how to determine the validity of an advance directive to guide the care of a person living with dementia. Although Walsh (2020) highlights this important and enduring issue in bioethics that animates this struggle—the challenging gap between theoretical ethical and philosophical research on the one side, and clinical practices and research on the other—the principles she proposes to guide and improve the interpretation of advance directives don’t entirely bridge this gap.

One of the key problems seems to be a muddled idea of retention of values in general, and autonomy (as a moral value) in particular. Medical guidelines and practices, and intricate theoretical accounts share an assumption. Patient autonomy is interpreted as something solely situated in the patient, and the patient alone, and mustn’t be interfered with. Under this assumption, advance directives, as documents safeguarding the autonomous choices of competent agents, are problematic. Like some clever prankster, they set up a conflict in the interpretation of the very autonomy they are meant to protect: what ought we to do when respect for the autonomy of patient P prescribes that we both respect Will Number 1 (W1) and Will Number 2 (W2) when W1 and W2 are mutually exclusive? This conflict becomes painfully clear in cases where P’s W1 is expressed in an advance directive as, say, “do not continue to feed me if I’m not able to feed myself,” and W2 is P’s expressed will to live to eat, enjoying ice cream but refusing to eat broccoli. In the end, we seem stuck on a question: “Which person do we listen to, the ‘then self’ or the ‘now self?’”

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