I am a postdoctoral researcher with the Neuroscience, Ethics & Society (NEUROSEC) team at the Department of Psychiatry, and with the Wellcome Centre for Ethics & Humanities.
I am working with the BeGOOD team, developing novel tools for bioethics research and engagement with young people in the context of early intervention in mental health. As part of this, I am the academic lead of the Phenutopia Project – a game-based public engagement and research project raising awareness and collecting data on young people’s values and attitudes towards digital phenotyping in schools. With the studies running within the project, we seek to show how digital tools can be used to improve empirical bioethics research methodology, and at the same time inform and engage public stakeholders.
Additional research interests include:
♦ Exercise, training, and sports
♦ Emerging diagnostics and treatments for neurodegenerative disease
♦ The role of identity and relations in dementia care and medical decision-making
♦ Artificial (AI), and Swarm Intelligence (SI)
♦ Frailty and multimorbidity
My background being in the field of analytic philosophy, I have a MA in Philosophy from Umeå University, Sweden. My Magistrate (1 year MA) thesis explored the landscape of moral enhancement as a means for criminal rehabilitation, and my Masters (2 year MA) thesis discussed ethical issues in decision-making processes leading up to deep brain stimulation (DBS) in paediatric populations.
In my PhD thesis, “The Ethics of Mind Maintenance” I analysed ethical trade-offs in the context of emerging technologies aimed at preventing and treating age-related neural decline and disease. The aim was to facilitate our understanding of value trade-offs involved in utilising technologies for neurodegenerative diseases, and to provide a guiding and ethically sound structure for patients and other users of said technologies.
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.
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 ContributionIn 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.
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.
Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia
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?’”
The terminology surrounding frailty is used in clinical settings, and in research and development for identifying processes of, and patients in, age-related physical decline. However, a framework suitable for age-related neurodegenerative diseases needs to (1) adequately account for the effects that the processes of aging have on neural decline and disease, and (2) be helpful in identifying relevant groups of users and patients. This is becoming increasingly necessary due to emerging possibilities to detect, prevent, and treat age-related neural decline and disease. Based on a number of relevant criteria, I distinguish four groups of patients and users: robust, non-frail, pre-frail, and frail. With the four groups defined, ethical assessments can be made on an individual basis regarding which medical technologies are best suited for a person who risks, or suffers from, age-related neurodegenerative disease.