06 May 2014   |   News

Proposed data protection law threatens research

Europe’s universities warn that new restrictions on the use of personal data will undermine important health and medical research

The European University Association (EUA) has added its voice to those protesting that amendments to the proposed data protection law, due to be put before the European Council of Ministers in June, could hamper scientific discovery.

The changes suggested by the European Parliament’s committee on civil liberties, justice and home affairs (LIBE) in October last year in response to revelations of systematic snooping by US National Security Agency, are designed to toughen up the rules that protect personal data.

But they may also threaten data sourcing for scientists, according to the EUA, adding its voice to that of other research bodies, which complained about the amendments in February (http://www.sciencebusiness.net/news/76446/Don%E2%80%99t-let-data-protection-kill-research).

Complex research issues such as those requiring the use of large personal data sets, for example the European Social Survey, which monitors social change across the continent, risk being compromised, EUA says.

The Association calls for the EU to strike a balance between individual rights to privacy and the need for openness in scientific collaborations, particularly in relation to the international transfer and secondary processing of data.

The stakes are the “competitiveness of European research at a global level”, the EUA says.

Medical and health research

Of particular concern is that the amendments may, “alter dramatically the ability to be able to conduct medical and health research.”

Under current regulations for protecting privacy, there is a requirement for specific and explicit consent for the use and storage of personal data, but an exemption for research - subject to certain safeguards.

This feature recognises that individuals’ interests can be protected through strong ethical and governance safeguards, such as approval by a research ethics committee.

With new proposals, data in research without specific consent would be prohibited, despite the fact that this research is subject to ethical approval and strict confidentiality safeguards, and that the identity of individuals is often masked.

The EUA agrees with the arguments raised in a petition by the UK research charity, the Wellcome Trust, which says, “At worst health research involving personal data would be illegal; at best it would be largely unworkable.”

More than 30 national bodies representing universities across Europe have signed the EUA statement.

The European Parliament accepted LIBE’s amendments in March. The Council of Ministers (Justice and Home Affairs, JHA) will meet on 5-6 June 2014 to discuss the proposal.

The new law is intended to replace the 1995 data protection directive.

See the EUA’s full statement here.

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