Recital 33
General Data Protection Regulation · UE 2016/679
| (33) | It is often not possible to fully identify the purpose of personal data processing for scientific research purposes at the time of data collection. Therefore, data subjects should be allowed to give their consent to certain areas of scientific research when in keeping with recognised ethical standards for scientific research. Data subjects should have the opportunity to give their consent only to certain areas of research or parts of research projects to the extent allowed by the intended purpose. |
In Luxembourg, scientific research involving health data is governed by the amended Law of 1 August 2018 on the organisation of the National Commission for Data Protection and by the Law of 14 July 2010 on research ethics committees, which mandates the opinion of the CNER (National Research Ethics Committee) before any interventional or observational study on humans. The CNPD coordinates with the CNER on GDPR aspects, particularly when research involves biobanks such as IBBL.
Luxgap practice: we systematically integrate the CNER + CNPD workflow into the Research Consent Orchestrator, with a dedicated connector to IBBL and Luxembourg hospital centres (CHL, HRS, CHEM, CHdN) to materialise the dual ethics and data protection opinion in an enforceable manner.
