Since 2017 the NFU has had a workgroup on Privacy, ethics and the law in health research. What do they do?

The incentive for setting up this workgroup was the implementation of the new privacy law (GDPR) and its influence on privacy and data protection in health research. In this workgroup the umcs can act in unison on issues involving the GDPR.

Topics that the workgroup has been very busy working on in 2020 include: 

  • The Health Research Code of Conduct Revision. Since 2004 this code of conduct has given researchers rules for dealing responsibly with personal data. The rules were due for revision. Various parties are now working on an update.

  • The Permission at the Gate procedure. In several umcs pilots have been conducted since 2020 in which they explicitly ask permission of patients to use their data and tissue samples for scientific research.