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The proposed wording -'explicit and specific patient consent' - implies that researchers would have to approach patients and ask for their explicit consent every single time new research is planned to consult their data or use tissue samples already stored.
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"Hope for patients facing a life-threatening disease like cancer is based on advances in research," said Kathy Oliver, International Brain Tumour Alliance Chair. "And research progress requires access to a wide pool of patient data, even from patients who have 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 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 and can withdraw their consent at any time. "Our proposal actually 'empowers' patients, allowing them 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 consent access to my data to help other patients receive better care and contribute to advance cancer research," noted Hans Keulen, a Dutch rare cancer patient from the Chordoma Foundation.
Paolo Casali, ESMO Public Policy Committee Chair, author of the official ESMO Position on the risks of the new Data Protection Regulation, said: 'We understand the need for the EU to address data privacy concerns in many sectors, but its effect on public health research was unintentionally overlooked."
"We are calling upon the EU to assure that all forms of public health research will survive and be able to function within the current safeguards, including the so-called withdrawable 'one-time consent' already accepted in the Clinical Trials Regulation, without adding a nearly impossible burden of re-consenting each patient, every time, for every single project, which could irreversibly slow down the accelerated pace that cancer research has gained over the past decades."
Read full story: http://www.esmo.org/Press-Office/Press-Releases/Is-Europe-Putting-Cancer-Research-at-Risk
About ESMO
The European Society for Medical Oncology is the leading European professional organisation committed to advancing the specialty of medical oncology to advance cancer care and cure. http://www.esmo.org
Media contact ESMO Press Office [email protected] +41-91-973-19-07
SOURCE European Society for Medical Oncology (ESMO)
