BSNL and the RSG-Switzerland co-organized in the biohacker space Hackuarium an open discussion about the risks, challenges and opportunities of medical data sharing.
Approximately 50 people attended the round table to discuss about different aspects related to Medical data access. And we were honoured to host as invited speakers:
– Jacques Beckman (Head of Clinical Bioinformatics, SIB),
– Christine Currat (Executive director of the Swiss biobanking platform),
– Manolis Dermitzakis (Professor of Genetics at the Department of Genetic Medicine, UNIGE) and
– Jeanne-Pascale Simon (Lawyer at the Unit of Legal Affairs, CHUV).
At the beginning, Jacques and Manolis told us about their view of this complex question, and exposed some of the current limitations and the link with their own research. They envisioned the situation that we will face in the future as patients, scientist or citizen.
Then, Jeanne-Pascale and Christine described the current status of the law  and how hospitals and more specifically the CHUV handle the biological samples and the patients consent for research and health services. One important point is the fact that the CHUV has started the Biobank to anticipate future challenges of personalized medicine in agreement with the current law. However, politicians are still working to create a more adequate legal framework, that will protect patient privacy and allow that society will benefit from new findings of scientists.For more informations about the Biobank you can read the following article: smw-2014-14033
The second part of the event started with the question about who is the owner of biomedical data and this lead speakers and the audience to a very interactive discussion. We talked about details of data sharing, ethics, the rights of patients, costs, technological infrastructure, citizen science, etc. The discussion ended with an “apéro” that finished at 23:00.
We are very glad that the discussion was very participative and useful to push biomedical research forward in the Lemanic area.
Leonor Rib and Jonathan Sobel