Is Europe putting cancer research at risk?
The European Society for Medical Oncology (ESMO), the leading pan-European association representing medical oncology professionals, has expressed concern that the proposed EU General Data Protection Regulation (1) could make cancer research impossible and add a significant burden to both doctors and cancer patients.
The proposed wording of the regulation stipulates ‘explicit and specific patient consent’, meaning that researchers would have to approach patients every single time research is planned in order to consult their data or use tissue samples stored for research purposes.
“Hope for patients facing a life-threatening disease like cancer is based on advances in research,” said Kathy Oliver, Chair of the International Brain Tumour Alliance.
“And research progress requires access to a wide pool of patient data, even from patients who have since passed away and can no longer provide consent to allow for research that could save lives in the future.”
Paolo G. Casali, ESMO Public Policy Committee Chair, author of the official ESMO Position Paper on the risks of the new Data Protection Regulation (2), said: ‘We understand the need for the EU to address data privacy concerns in many sectors, with the surge of risks brought about by the use of digital information, but its effect on public health research may have been unintentionally overlooked.”
Read the whole article at ecancer.org
Reference
- European Parliament’s Legislative Resolution on the General Data Protection Regulation
- P. G. Casali on behalf of the European Society for Medical Oncology (ESMO) Switzerland (2014). Risks of the new EU Data protection regulation: an ESMO position paper endorsed by the European oncology community Annals of Oncology DOI: 10.1093/annonc/mdu218
Keywords: European Society for Medical Oncology, cancer research, processing of personal data, European Union
25. 7. 2014 ecancer.org
