Navigation Links
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, author of the official ESMO Position Paper on the risks of the new Data Protection Regulation [5], 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."

Population-based cancer registries, for example, storing information to monitor disease trends, are intrinsically incompatible with any requirement of individual consent: "If a patient is allowed not to consent use of his/her anonymised data for the registry, the data provided by that registry will be unrepresentative and can lead to incorrect conclusions for public health actions," noted Casali.

ESMO is in favour of the inclusion in the EU General Data Protection Regulation of the withdrawable 'one-time consent' concept [6] already foreseen in the Clinical Trials Regulation [7] adopted by the European Union in 2014, which allows to use data already stored beyond the end and the specific scope of a trial, with the usual strict safeguards.

"We are calling upon the European Union to assure that all forms of public health research will survive and be able to function within the safeguards that are in place, without adding the nearly impossible administrative 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."


'/>"/>

Contact: ESMO Press Office
media@esmo.org
European Society for Medical Oncology
Source:Eurekalert

Related medicine news :

1. Biofeedback Federation of Europe Enters Distribution Agreement with Zukor Interactive
2. Europe Omega 3 & Structured Lipids (Nutraceuticals) Market is Expected to Reach $989.91 Million in 2018 - New Report by MicroMarket Monitor
3. Europe Air and Missile Defense Radar Market is Expected to Reach $2.07 billion in 2020 - New Report by MicroMarket Monitor
4. Europe Drilling Fluid & Completion Fluid Market is Expected to Reach $1.7 Billion in 2018 - New Report by MicroMarket Monitor
5. Europe Vitamins (Nutraceuticals) Market is Expected to Reach $1,202.08 Million in 2018 - New Report by MicroMarket Monitor
6. Europe Bio Fertilizer Market is Expected to Reach $4,582.2 Million in 2017 - New Report by MicroMarket Monitor
7. Europe Bio Stimulants Market is Expected to Reach $940.6 Million in 2018 - New Report by MicroMarket Monitor
8. Kyowa Hakko’s Citicoline Obtains Novel Food Registration status in Europe
9. U.S and European Video, High – Tech and Integrated Operating Room Market Outlook to 2019: Led by STERIS, Stryker and Karl Storz
10. Europe Cardiac Surgery Device Market Value to Go Beyond USD 3.4 Bn by 2020, According to iData Research Study Available at MarketPublishers.com
11. The Lecithin Market in Europe is Expected to Reach $315.9 Million by 2019 - New Report by MicroMarket Monitor
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/26/2016)... Orion, Clarkston, Michigan (PRWEB) , ... June 26, ... ... with respect to fertility once they have been diagnosed with endometriosis. These women ... intercourse but they also require a comprehensive approach that can help for preservation ...
(Date:6/25/2016)... ... ... The temporary closing of Bruton Memorial Library on June 21 due to a possible lice ... overlooked aspect of head lice: the parasite’s ability to live away from a human host, ... a necessary one in the event that lice have simply gotten out of control. , ...
(Date:6/25/2016)... (PRWEB) , ... June 25, 2016 , ... As a ... Magna Cum Laude and his M.D from the David Geffen School of Medicine at ... returned to Los Angeles to complete his fellowship in hematology/oncology at the UCLA-Olive View-Cedars ...
(Date:6/25/2016)... (PRWEB) , ... June 25, 2016 , ... Conventional wisdom ... of success. In terms of the latter, setting the bar too high can result ... more than just slow progress toward their goal. , Research from PsychTests.com ...
(Date:6/24/2016)... , ... June 24, 2016 , ... June 19, 2016 ... dangers associated with chronic pain and the benefits of holistic treatments, Serenity Recovery ... are suffering with Sickle Cell Disease. , Sickle Cell Disease (SCD) is a disorder ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... 2016  Consumers have taken a more active ... more emphasis on patient outcomes. ... the pharmaceutical industry have evolved beyond just providing ... are focusing on becoming more patient-oriented across their ... services that improve health. ...
(Date:6/24/2016)... 2016   Bay Area Lyme Foundation , ... Center for Tick Borne Illness , Harvard Medical ... Hacking Medicine, University of California, Berkeley, and the ... five finalists of Lyme Innovation , the ... 100 scientists, clinicians, researchers, entrepreneurs, and investors from ...
(Date:6/24/2016)... 24, 2016 The Academy of Managed Care ... that would allow biopharmaceutical companies to more easily ... make formulary and coverage decisions, a move that addresses ... medicines. The recommendations address restrictions in the ... the drug label, a prohibition that hinders decision makers ...
Breaking Medicine Technology: