DigiCare4You EAB meeting
The second DigiCare4You EAB meeting was held on 6th June 2023). The Ethics Advisory Board (EAB) was formed to keep the interests of the general public and civil society in mind. For any EU-funded project, the EAB's role is to ensure that no EU regulations are violated while ensuring that research conducted abroad meets accepted EU standards. When a project funded by EC has societal implications, the question of ethics arises, and in these cases, the EABs are asked to make the appropriate assessments. More information about the EAB can be found here.
The meeting was held virtually and representatives of the external members of the EAB were presented, the project coordinator HUA, legal and ethical manager Privanova as well as representatives of technical partners CERTH and METEDA.
After the short introduction, the project coordinator presented the most important facts about the progress of the project so far and the further plans. Following this, CERTH representatives presented the conceptual issues about platforms used for screening and data management issues. After the CERTH presentation, METEDA presented the digital tools MetaClinic - DiaWatch and MetaDieta - MyDiet. Afterwards, the discussion was opened.
External EAB members were interested in the tactics that project partners plan to implement to open up the data for further research, but also to appropriately protect privacy. It was stressed that open data is critical to future exploitation activities, but that protecting personal data is also one of the fundamental ethical requirements. As part of the tactics, anonymization was discussed as a possible option, as was the use of a data separation strategy that would prevent the identification of natural persons but allow access to important information. It was concluded that the project partners should carefully consider these conflicting issues and find an appropriate balance when developing the exploitation strategy.
Given the data management challenges, it was recommended that project partners consider support from the Booster Program. This support mechanism could add value to the project and their activities. In addition, the use of the European house data space was recommended as a support option.
Regarding legal requirements, the discussion focused on transparency requirements and the mechanisms used to meet those requirements. In addition, considering profiling practices used in the project activities, it was also recommended to ensure that mechanisms are in place to allow the data subject to exercise his/her right to the object processing of personal data. Finally, the psychological impact on children and their parents as a result of health interventions was raised as a possible ethical challenge.
The next meeting was planned for autumn 2023.