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Is Europe putting cancer research at risk?
Date:7/25/2014

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 [2] 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 [3]. "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."

"This could put a halt to many public health research efforts," said ESMO President Rolf A. Stahel. ESMO proposes that the text of the EU General Data Protection Regulation includes a 'one-time consent' for research, ensuring patients are aware of what they are consenting to --with the appropriate safeguards in place, and that they can withdraw their consent at any time. "Our proposal achieves the correct balance between the right to privacy and the right to health," the ESMO President continued. "It actually 'empowers' patients, allowing them to choose whether to donate their data and tissue for public health research, whose ultimate goal is to find cures."

"As a cancer patient, I cannot think of any reason not to allow access to my data to help other patients receive better care and contribute to advancing cancer research," noted Hans Keulen, a Dutch rare cancer patient from the Chordoma Foundation [4].

Paolo G. Casali, ESMO Public Policy Committee Chair, au
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Contact: ESMO Press Office
media@esmo.org
European Society for Medical Oncology
Source:Eurekalert

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