Camille Marin, Research Engineer at INSERM and Project Manager of RaReTia

My name is Camille Marin and I am a research engineer at INSERM and currently project manager of RaReTiA. This project aims at creating a database for rare eye diseases and then exploit the data for clinical research, using AI tool among others.

Medical science is not my original research field. I have a particle physicist PhD, so lately I decided to take several online courses to have a modern and rigorous view on how data are handled in the healthcare system (mainly because regulation is changing quite swiftly). These courses were advertised within the ERN-EYE network and I saw them as a great opportunity to improve my knowledge in the field of ethics. Since I have a very technical profile, I thought it would be very interesting and useful to see how can we use medical data from another perspective. That’s why I registered for all the modules and I am really glad I did it.

In my opinion, when working with data, especially healthcare data, is that it is easy to forget about the human dimension. These courses ask a lot of questions, and give you opportunities to make your mind (or not) about many subjects: what is ethics? How should we address ethics issues around the word? When should we consider that regulations are outdated regarding ethics? Are the data and the scientific outcomes we get from them really the heart of research in healthcare? How can we address the growing concerns around genetic data?

I still don’t have answers for all these questions and the dozen others that were raised from these courses, but this is not a problem at all: it is not results that matter but the journey that I have undertaken, the awareness I gained on so many issues/topics regarding healthcare data that I did not think of previously.

I especially liked the courses from Patrick J. Wall, where he shared his experience on the field in Africa. I also enjoyed the talk by Prof. Pierre Collet that took us back to the very definition of what is ethics. I think that the course from Dr. William Cawthorn is of public matter and it should be given to any new researcher before he/she starts treating any kind of data. I cannot finish this review without quoting the stunning course from Prof. Orsolya Peters and her insights about genetic data. 

I am confident that these courses will have a strong impact on me and on the way I am dealing with healthcare data. I do not see it anymore as just a resource but as a piece of a bigger structure that should be considered as a whole to do research, not for the greater good but as a rightful and thoughtful process. 



Fatima Irfan, PHD Student, University Medical Center Göttingen

I am Fatima Irfan, PhD Student in Department of Geriatrics of Universitätsmedizin Göttingen. In research we always experience misunderstanding and conflicts when it comes to topic of regulating data, as with who or when a data can be shared. I wanted to have clear understanding of does and don’t of DATAETHICS. The coordinator of CVS program shared DATAETHICS course with us via email. I immediately get myself enrolled because I was looking for Ethics courses that will help me in research data handling. The course proves to be beneficial as it gives details and well explanatory understanding of data interpretation and handling. With help of dilemma story in course, I can relate topics and teaching with real life situations. I will definitely apply teaching of this course in promoting fairness, reduce biasness and addressing data protecting in my future work.