No blocking research data, please http://t.co/WvuCuxM7vI— Susana Borras (@SusanaBorras) March 11, 2014
Final non paper The European Parliament and the European Council are currently debating a new legislation about data protection. In the aftermath of Snowden’s affair and in the dawn of the big data era, there is currently a tendency in the political debate towards maximizing personal protection. This is indeed an important matter, and a necessary debate. Individual persons’ data protection is crucial, and the legislation must protect individual citizens. However the debate needs to be rebalanced a bit, because an obsessive and excessive individual data protection might end up harming the individuals and societies in unexpected ways.
This is the case of research data that is linked to civil register data. This type of data is mostly used for medical research. The Scandinavian countries have traditionally had a very comprehensive civil register data about their citizens. This data is combined with quite extensive medical data on these citizens, which comes typically from biobanks (tissue, blood, cancer tumor, etc). The scientific benefits of this data are undeniable. Several examples can be seen in a recent Danish non-paper.
The massive amount of individual citizens used in this type of research data makes virtually impossible to ask for individual consent to each of these persons. The size of the data is precisely what makes this data scientifically relevant and valuable. For that reason, the Scandinavian countries current legal framework does not request individual consent, but secures personal data protection through other legal mechanisms. These mechanisms are: a strict regulatory framework about the conditions under which the data can be used, an authorization and monitoring system that controls effectively this use, and a high level of law enforcement in these countries with an effective judicial system.
Members of the European Council and of the European Parliament must acknowledge the risk of enforcing a “one-size-fits-all” requirement of individual consent throughout Europe and throughout all types of data. The risk is actually killing an indispensable source of large-scale data for medical research that has put Europe at the forefront of medical scientific successes worldwide.
There are many types of data. And there are many ways and purposes for using data. Do not block research data, please.