@FAndreMD Don’t forget it’s the national interpretation of the GDPR... And just give the patients access to their data and ability to share in a safe way and you’re OOT (out off trouble ;-))

@BettinaRyll thank you Bettina; whatever is the reason, the outcome in the daily life is that we can't share curated and raw data with our colleagues in an open way, that is one of the most effective datasharing modality.

@FAndreMD agree, this will affect progress in precision oncology

@FAndreMD Even anonymised datasets ?

@FAndreMD Why isn‘t it up to the patients, if they are willing to share their anonymised data. In my experience data security is something for healthy people. For most patients it‘s completely different

@FAndreMD Totally agree!

@FAndreMD Time to write a white paper

@FAndreMD @FendtLab If you want to share frustration on this topic, let’s make an appointment, but make sure you have an intere free week in front of you...😒

@joaomaiadias This is the main issue; people who work on GDPR & know it well from a technical & theor perspectives do not know that its daily implementation by others is a disaster and has a major deleterious impact on translational research in EU (TR that is expecting to improve pt outcome)

@FAndreMD @StefanFrohling Same here: improving the local genomic data with clinical data, nearly impossible to share with other datasets.

@FAndreMD @smead2 @eshg

@FAndreMD I suspect (do not know) that some local interpretations of GDPR are better than others and that you may not be subject to one of the best.

@FAndreMD We need technical solutions that can make open science GDPR-compliant. Federated machine learning platforms like the one we're building with @Feature_Cloud offer a solution.

@FAndreMD It should be up to people/patients (as they are the same thing) to opt in, generally or specifically

@FAndreMD ICYMBI @s8mb @AlecStapp

@FAndreMD Why many data scientists find bioethical compliance concerning protection of patients' personal and genetic data frustrating? INFORMED CONSENT is key to protect the use of our most intimate data while fostering the common good & not being mere numbers for research @bioeticaidret

@FAndreMD I am not familiar with your particular case, but: 1) Can the consent form for the next study be improved to address this? 2) Is there another potential legal basis e.g. public interest and not only consent? Of course this is influenced not only by GDPR, but other laws as well.