19 November 2015
Open letter in the Times calls on European Institutions to find a balance in the proposed Data Protection Regulation to keep vital health data available for research, while keeping individual’s data safe.
The letter which is coordinated by the Wellcome Trust and has 128 signatories says: “Some of Europe’s most important medical discoveries, such as establishing the link between smoking and cancer, would not have been possible without using personal data.”
First proposed in 2012, the new data protection law will control how researchers use individual’s data and will be applied directly across all EU Member States. The EU is reaching the final stages of negotiations on the law.
The initial 2012 draft Regulation set out a proportionate mechanism for protecting privacy and keeping vital health data available for research under certain safeguards, but the proposed 2013 amendments shift this balance, according to the group behind the letter.
PHG Foundation has joined with patient, research and medical organisations to call for these amendments, which could have a damaging effect on life-saving research, to not be included in the final text.
The outcome is far from certain and the European Institutions are developing their solution over the next few weeks. 6000 people have signed the Wellcome Trust petition to show they want the new law to allow researchers to continue to use individuals’ data safely and securely in health research. For more on the campaign see the position statement.