On 22 November a group of PERMIT consortium members, associated partners, members of the Ethics Advisory Board and external experts gathered to brainstorm on the ethical and data protection issues of personalised medicine research. This workshop aimed to facilitate the preparation of an inventory of issues that can arise across the personalised medicine research pipeline relating to ethics and data protection. Investigators, ethicists, members of patient organizations, clinicians and other participants share their experiences and insight on the existing challenges and shed light on potential solutions, namely in terms of patient autonomy, access to personalised medicine technologies and research, and co-design of personalised medicine trials. The inventory will be detailed in a report that will be made publicly available, and should be able to inform future research projects.
23 November 2021