Russell Group urges change to potential EU regulations

03 March 2014

This article was amended on 12th May 2014 to reflect a vote in the European Parliament at which the amendments of the LIBE Committee were adopted by the Parliament as a whole.

The Russell Group has joined other research and representative organisations to call upon members of the European Parliament, Commission and the Council of Ministers to oppose amendments to EU data protection regulations which could significantly curtail ground-breaking scientific, medical and societal research across Europe.

The full statement and list of signatories is below.

Protecting health and scientific research in the Data Protection Regulation

Health and scientific research will be severely threatened if the amendments to Articles 81 and 83 of the Data Protection Regulation adopted by (originally 'proposed by the LIBE committee of') the European Parliament are taken forward. Scientific research generates important benefits by improving our understanding of society, health and disease. If implemented, the amendments would make much research involving personal data at worst illegal, and at best unworkable.

In order to protect valuable research while protecting privacy, we urge:

• the Council of Ministers to maintain the Commission’s text on Articles 81 and 83 and associated provisions when agreeing its general approach;
• MEPs to seek a more positive outcome for research in trilogue negotiations (originally: 'oppose the LIBE Committee’s amendments to Articles 81 and 83 in the plenary vote'); and
• the Council of Ministers and European Commission to oppose the European Parliament's (originally: 'LIBE Committee’s') amendments to Articles 81 and 83 in trilogue negotiations.

The original draft Regulation set out a proportionate mechanism for protecting privacy, while enabling health and scientific research to continue. It included a requirement for specific and explicit consent for the use and storage of personal data, but provided an exemption for research, subject to certain safeguards in Article 83. This recognised that individuals’ interests can be protected through strong ethical and governance safeguards, such as approval by a research ethics committee.

The European Parliament's (originally: LIBE Committee’s) amendments to Articles 81 and 83 very significantly reduce the scope of this research exemption. The use of personal data in research without specific consent would be prohibited or become impossible in practice, despite the fact that this research is subject to ethical approval and strict confidentiality safeguards, and the identity of individuals is often masked.

This would put at risk significant European investments in genetics, cohort studies, biobanks, disease registries and the use of routinely collected data, and associated progress towards understanding society, health, and disease.

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