An overview of medical genetics and data sharing in The Netherlands

1. SESSION VI
HVP Country Nodes
Thursday 2nd June
The Netherlands
Generade Center of Expertise Genomics (Peter Taschner)
Dutch Society of Genetic Diagnostic Laboratories (VKGL) (Marielle van Gijn)

2. Netherlands: a snapshot
• Clinical laboratories: 9
• Clinicians: ~43.000
• Genetic Counselors: ~160
• Genetic testing & genetic healthcare services:
– Genetic testing is funded by the health insurance
• National Human Genetics Society:
– Dutch society of Humane Genetics (NVHG)
– President Prof. dr. F. Baas,
– Next Meeting 06-10-2016

3. HVP Country Node: Organisation
• Year established: 2015
• Structure: no independent structure yet, operate in
connection with (national) societies (VKGL, NVHG) and
research organisations (Generade, LOVD-team LUMC)
• Funding: none
• Links with NHGS: part of VKGL datasharing working party
• Ethical framework, privacy, consent: to be established
according to Dutch/European guidelines and law

4. HVP Country Node: Technical
• National data repository: not yet, pending
• Data available nationally: locally in the 9 centers
• Data available internationally: LOVD and other disease specific
databases
• Available:
– Data Collection Policy: na
– Collection Agreement: na
– Data Access Policy: na
– Data Ownership Policy: na

5. Progress, Plans and Problems
• Progress in the past 12 months:
– All BRCA legacy data from the 9 centers was collected, curated and added
to the LOVD database
– Based on pilot studies from the VKGL data sharing working party:
Data share proposal addressing sharing variant classification and
frequency data.
• Grant (21keuro) from Dutch Biobanking and Biomolecular Research
Infrastructure project (BBMRI-NL)
• Additional funding from the Genetic Centers pending
• Plan for the next 12 months:
– Start a national database
• Problems/barriers we face:
– Lack of resources
– Lack of priority for genetic data sharing
– Lack of clear guidelines/law to address privacy issues