The proposed changes to the EU Data Protection Regulation announced today by the European Council of Ministers are an important step to protect research from the potentially devastating consequences of amendments proposed by the European Parliament.
“We owe it to the patients of tomorrow to ensure the research we do is as relevant and ambitious as it can be” – Emma Greenwood, head of policy development at Cancer Research UK
In contrast to Parliament’s position, the changes maintain the original, balanced approach that recognised the important exemptions needed for the use of personal data in research. The new text also acknowledges the vital role of safeguards in protecting people’s privacy when data are used in research.
Members of the European Data in Health Research Alliance – including Cancer Research UK, The Medical Sciences Committee of Science Europe, European Public Health Alliance, European Patients’ Forum, the Federation of European Academies of Medicine, the Wellcome Trust, and the British Heart Foundation – urges the Council to continue to take into account research and health concerns as talks continue on other parts of the Regulation.
Emma Greenwood, head of policy development at Cancer Research UK, said: “We owe it to the patients of tomorrow to ensure the research we do is as relevant and ambitious as it can be. By proposing severe limits on the use of personal data earlier this year, the European Parliament’s position on the Data Protection Regulation threatened to undermine how we do research in Europe.
“The Council of Ministers has now made a step in the right direction, and research needs to continue being prioritised on this issue from now on.”
Professor Richard Frackowiak, Chair of the Science Europe Medical Sciences committee commented: “This is a good day for European research with society, legislators and scientists working together to establish best practice to promote good health for all European citizens.”
Laurène Souchet, European Patients’ Forum Policy Officer, said: “We welcome that the Council of Ministers has made a step in the right direction, as for patients reaching the right balance on consent provisions for research is key. From the patients’ perspective ensuring we have adequate rules that allow the use of health and genetic data to advance health research is crucial.”
Professor Peter Weissberg, Medical Director at the British Heart Foundation, said: “Medical researchers have used data to make discoveries that have saved thousands of lives.
“We need a balanced regulatory system which supports researcher access to data while also protecting the rights of patients.
“We need to ensure that the importance of research continues to be reflected in this legislation so that scientists have the tools they need to make new advances.”
Professor Dermot Kelleher, President of the Federation of European Academies of Medicine, said ‘”This is an encouraging first step in the right direction for supporting a dynamic European health research and the welfare of EU citizens. The European Data in Health Alliance is a great platform for further public engagement on this key issue and I am pleased of FEAM’s involvement in this timely Alliance.”
Nicola Perrin, Head of Policy, Wellcome Trust said: “Life-saving and life-enhancing medical research increasingly relies on patient data used under robust safeguards, and the severe constraints on its use proposed by the European Parliament would hold back important progress. The Council of Ministers is thus to be commended for proposals that would provide critical exemptions for research, which would allow vital studies to proceed while ensuring individuals’ data are used safely and appropriately. We urge the Latvian Presidency to build on this agreement to ensure Council adopts a positive position for health and research in the remaining text.”
The announcement comes as the European Data in Health Research Alliance launches a new digital campaign to inform and advise European policymakers on the proposed EU Data Protection Regulation.
The campaign takes a fresh look at the proposed EU Data Protection Regulation. It explains what is at stake for research in the draft law and gives a voice to the many patients and researchers who are at the very heart of it.
To find out more about the campaign visit: http://www.datasaveslives.eu/
For media enquiries contact the Cancer Research UK press office on 020 3469 8300 or, out of hours, on 07050 264 059.
The European Data in Health Research Alliance brings together academic, patient and research organisations from across Europe. The Alliance was established by Cancer Research UK, The Medical Sciences Committee of Science Europe, European Public Health Alliance, European Patients’ Forum, the Federation of European Academies of Medicine, the Wellcome Trust, and the British Heart Foundation.
The Alliance is committed to ensuring that the EU Data Protection Regulation allows the seminal research that has taken place for many years to continue by ensuring research is not subject to an obligation to ask specific consent when personal data is used.
You can find the European Data in Health Research Alliance at www.datasaveslives.eu.