EU agreement on data protection a step forward for health research
FOR IMMEDIATE RELEASE
Health research bodies and data scientists are holding a Day of Action in Brussels today following yesterday’s announcement in Luxembourg of an agreement between the 28 EU governments on a new EU-wide data protection law.
The groups are hoping to safeguard the future of health research by highlighting the unique data use issues that emerge in areas such as cancer research.
Professor Barry O’Sullivan, director of Insight Ireland, Centre for Data Analytics, said:
“Yesterday’s text, agreed by the Council, represents a positive step forward. The next six months of negotiations are critical – we must ensure that the needs of the research community are prioritised while safeguarding individual rights and privacy. Insight Ireland, one of Europe’s largest data research centres, is working with health research organisations across the EU to balance these needs.”
It is hoped that a General Data Protection Regulation will emerge by the end of the year. Scientists and patient advocacy groups have expressed concern that the strict new data privacy rules could stifle health research by making large amounts of data inaccessible. They are calling for the new regulation to distinguish data research in the public interest (such as publicly-funded health research) from commercial and other data processing.
“Health and other research delivers benefits to society using personal data and currently protects privacy through various ethical and governance safeguards,” said Prof O’Sullivan. “Regulation should promote positive conditions and appropriate safeguards for these essential activities in Europe. Insight Ireland is committed to maintaining a strong voice in Europe on this issue as we progress towards General Data Protection Regulation.”
Insight is working with Europe’s biggest biobanking organisation, BBMRI-ERIC, as well as scientific research and healthcare bodies and patient advocacy groups on a Day of Action on 16 June 2015, consisting of a seminar and meetings with EU policy-makers.
The group has three priorities.
1. Current rules include exemptions that allow researchers to use data without repeated consent. They are calling for these exemptions to be maintained.
2. Where these exemptions exist the group is insisting on strict safeguards to protect personal data.
3. The group is calling for common rules across the EU to enable research collaboration between member states.
“Research is a transnational effort relying on the altruism of many. The ultimate responsibility is to make best use of the entrusted data, ” Jan-Eric Litton. Director General. BBMRI-ERIC.
NOTES FOR THE EDITOR
Insight Ireland is one of the Europe’s largest data analytics research centres, and the largest SFI funded research body in Ireland. With over 350 researchers and 40 industry partners, Insight Ireland is an increasingly dominant voice in the development of data policy in Europe.
BBMRI-ERIC is one of the largest health research infrastructures in Europe. BBMRI-ERIC primarily aims at establishing, operating, and developing a pan-European distributed research infrastructure of biobanks and biomolecular resources. This will facilitate the access to biological resources as well as biomedical facilities and support high-quality biomolecular and medical research. Sixteen member states have joined BBMRI-ERIC to date.