On Wednesday 8 February, members of the eBRAIN-Health Public and Patient Advisory Group, Lilo (Germany), José (Spain), Eileen (UK) and Julie (UK), met online for their first consultation. The meeting was also attended by Leon Stefanovski (Charité University Berlin) and Dianne Gove (Director for Projects at Alzheimer Europe), and facilitated by Daphné Lamirel (Project Officer at Alzheimer Europe). The last member of the group, Fernando (Spain), sent his apologies but provided some written feedback which was presented and discussed as part of the meeting. The members presented their varied backgrounds as well as their motivations and enthusiasm to join the PPAG. All expressed a wish to have their voices heard and contribute to improving research in the field of dementia.
The meeting included a presentation of the overall project and a discussion of the concept of digital brain twins. In the second part of the meeting, members gave their views on issues related to the ethics and trustworthiness of digital brain twins. Conversations revolved around the use of digital brain twins in the clinic, privacy, transparency and public expectations. All participants provided very valuable insights and opinions – all of which will serve to inform the eBRAIN-Health Ethical and Legal Framework. The next meeting of the Group is due to take place in March and will continue its focus on the ethics of digital brain twins as well as on AI use in medical research more broadly.
