For immediate release
Friday 05 December, 2014
EU COUNCIL OF MINISTERS SIGNAL STRONG SUPPORT FOR RESEARCH
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.
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”
“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.” said Laurène Souchet, European
Patients’ Forum Policy Officer
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.
ENDS
For media enquiries contact Simon Shears in the Cancer Research UK press office on 020
3469 8054 or, out of hours, on 07050 264 059.
Or Clare Ryan, Senior Media Officer at the Wellcome Trust on 0207 611 7262 or
c.ryan@wellcome.ac.uk
Notes to editor:
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.