Data protection: EUA highlights potential threat to research

In 2012, the European Commission proposed a major reform of the EU legal framework on the protection of personal data. European universities engaged in research that requires the use of personal data will be affected by the proposed Data Protection Regulation, which is currently going through the co-decision process. The Council of the European Union (member states) is expected to define its position later this year.

Yesterday’s statement sets out EUA’s position on the topic ahead of the Council of the EU Justice and Home Affairs meeting, which brings together justice and home affairs ministers from EU member states and is due to take place in June. The statement aims to alert ministers present to the need to balance the protection of individual data and its availability for the purposes of scientific research. The statement notes that EUA shares the concerns and views of a number of non-commercial research organizations – as outlined in the statement on the Wellcome Trust website – with regards to some of the LIBE Committee amendments to the Commission’s proposal.

The EUA statement also notes that “some of the LIBE Committee’s amendments in Art. 42, Art. 81 and Art. 83 impose restrictions that may unintentionally threaten scientific advancements” in a number of areas. For example, in the field of social sciences, restrictions could affect long-term studies and investments, and in the field of individualised medicine and personalised preventive medicine the effectiveness of essential tools could be severely compromised.

EUA notes that the LIBE Committee’s amendments would alter the ability to be able to conduct medical and health research (Art. 81). The precise legal impact of the proposed amendments for scientific research across Europe is still uncertain, but the unintended consequences may be quite dramatic.  The statement also stresses that proportionate mechanisms regarding secondary processing of data (Art. 6(4)) and/or international transfer of data (Art. 42), with due safeguard provisions, will be important to support large European investments (for example in bio-banks).

The EUA statement urges ministers to adopt the original European Commission proposal, which it notes was “drafted to meet the needs of scientific research, and had proportionate mechanisms for protecting individuals’ privacy in health and medical research”, and in particular to “keep the content of Articles 81 and 83 as initially drafted”. The full EUA statement can be downloaded here.