What is your current role in EPAD?
I work on ethical and social questions related to the development of the EPAD project, conducting qualitative research and coordinating the work of the EPAD ‘ELSI’ (Ethical, Legal and Social Implications) group. This group, led by Shirlene Badger, Edo Richard, Luc Truyen and Carol Brayne, consists of clinicians, philosophers, social scientists and biomedical researchers. Over the first two years of EPAD, our main role was to produce guidance related to ethical considerations associated with setting up and running such a novel project. These cover the whole EPAD ‘journey’, from recruiting from existing studies, to explaining the project to potential participants and the return of results from EPAD research – particularly the disclosure of Alzheimer’s disease biomarker information as part of clinical trials recruitment. We have also carried out qualitative research related to the potential implications of learning biomarker test results related to Alzheimer’s disease.
I’m now working on putting some of our recommendations into practice, and I’m particularly focussed on getting the EPAD Participant Panel up and running in the next few months. EPAD already includes representatives of patients’organisations as partners in the study, and we want to take this further to make sure that the voices of EPAD participants themselves are represented in the running of the project, and that we can learn from their experience.
What did you do prior to joining EPAD?
I’m a social scientist by background, and my research interests focus on social and ethical implications of developments in the biosciences, particularly related to genetic technologies. I’m really interested in the interplay between research (whether in the public and private sector), regulation and the public. Immediately before EPAD, I was doing ethnographic research examining how developments in neuroscience research move from lab to clinic, the barriers and facilitators associated with this process, and its social and ethical consequences – for example related to how we understand disease or healthy ageing.
Tell us a bit about the institution/company/organisation you work for?
I’m part of a group of social scientists based in the Institute of Public Health at the University of Cambridge, led by Shirlene Badger. Our work examines social and ethical questions associated with biomedical research, particularly in dementia and Alzheimer’s disease. The Institute of Public Health itself is a multidisciplinary endeavour, working across the academic, health service and policy arenas. One particular area of strength is in non- communicable diseases and diseases of ageing; how they reduce well-being in populations in the UK and internationally; and how prevention, treatments, interventions and services can reduce the impact of these disorders and improve health.
What are your expectations from the EPAD project?
EPAD is a really ambitious effort to develop a new structure and way of working around Alzheimer’s clinical trials, so it’s a fascinating project to work on. From my perspective, it’s been great to see the commitment within EPAD to working through the ethical and social implications of this novel approach to research, and hopefully the work that we have done on these questions will be valuable for future initiatives elsewhere. I’d also hope that ultimately some of our work on ethical and social questions will add to the findings from the EPAD cohort and adaptive trials to give us a better understanding of what the future of Alzheimer’s disease could, but also should, look like in clinical practice.