Continued concern over new proposal for European data protection legislation

Several organisations dealing with different aspects of research based on broad consent and/or large databases, such as population based registers or large biobanks, express continued concern over the proposed text for a new legislation taken by the Committe for Civil Liberties, Justice and Home Affairs of the European Parliament (LIBE) on October 21, 2013. Organisations that have taken recent initiatives include the Biobanking and Biomulecular Resources Reserach Infrastructure of the Netherlands, the International Epidemiological Association, and the Swedish Academy of Science.

In particular, concern is raised about the possibility to continue large scale health related life saving research for the benefit of European populations. For sensitive health data, the proposed safeguards include extended requirements for specific personal consent that may threaten the possibility to conduct large scale research studies where it would be impossible to obtain active contact with hundreds of thousands of research subjects For social science research that does not involve sensitive health data the situation looks somewhat better.  During the spring of 2014 the rapporteur of LIBE Jan-Philippe Albrecht has been mandated to discuss the proposal with representatives of the Council of Ministers. Researchers are encouraged to voice their opinions and inform decision makers of the prerequisites of register based research during this process.