"Modern man does not experience himself as a part of nature but as an outside force destined to dominate it. He even talks of a battle with nature, forgetting that, if he won the battle, he would find himself on the losing side."— E.F. Schumacher, 1973

De Genetische Kliniek van de Toekomst

De Proeffabriek is nauw betrokken bij de 'genetische kliniek van de toekomst', een initiatief van het UMC Utrecht. Dit project brengt de uitdagingen rond de klinische toepassing van next-generation sequencing in kaart. Het project bouwt voort op de resultaten van het NGI-verankeringsproject ReDaPeD en de bevindingen van een serie workshops georganiseerd door het Centre for Genome Diagnostics en CSG Centre for Society and the Life Sciences. Het verslag van de derde CGD-ReDaPeD workshop van 16-17 januari 2014 in Brussel is hieronder te lezen (in het Engels):

Radical interdisciplinarity

An interdisciplinary group of experts gathered in Brussels on 16-17 January 2014 to discuss stepping stones towards the genetics clinic of the future. The main objective of the workshop was to address controversial, interdisciplinary challenges to clinical implementation of next-generation sequencing.

The workshop participants discussed challenges within five areas of the genetics clinic of the future: the living room, the doctor’s office, the laboratory, the server room and the main entrance. After introductory presentations to each area, participants prioritised challenges within and across the different areas. Rather than attempting to provide a single comprehensive answer to the varied and complex challenges surrounding the genetics clinic of the future, the workshop participants suggested a stepping stone approach.

Addressing controversial, interdisciplinary challenges to the genetic clinic of the future - such as the establishment of appropriate data sharing policies, data protection regulation, data storage in electronic patient records and regulating beyond-the-clinic genetics - requires focused, constructive interactions that take into account the interrelatedness of (partial) solutions: researchers from the natural and social sciences, medical professionals, policy makers, patients and citizens have to engage in dialogue on the design principles of data infrastructures as genomic technologies mature and become embedded in routine diagnostic procedures.

geneticsclinicofthefuture.org

www.geneticsclinicofthefuture.org is nu online. Deze site zal verslag uitbrengen van de ontwikkelingen rond de genetische kliniek van de toekomst.

Workshopverslagen