Data protection changes risk ‘dire consequences’, scientists warn

Scientists have warned that evidence-based policy making in Europe is at risk from changes to a data protection regulation being considered by the European Union.

August 16, 2014

An open letter, signed by almost 30 leading scientists, warns of “dire consequences” for European research if the changes are approved.

The amendments, designed to protect people’s personal data, could prevent “vital economic and social research”, it states.

The letter is the latest in a string of petitions that have surfaced since January calling for the changes to be scrapped.

Previously the Wellcome Trust, Medical Research Council, European University Association and the European Society for Medical Oncology have spoken out about the risk they could pose to science.

The European Parliament’s Committee on Civil Liberties, Justice and Home Affairs proposed the amendments in October 2013 and the European Parliament adopted them into a draft regulation in data protection earlier this year.

EU ministers have yet to approve the regulation, and the letter, signed by Paul Boyle, president of Science Europe and chief executive of the Economic and Social Research Council, warns of the risks if they do.

“There would be dire consequences for European research and the value it can bring to government, the economy and society at large,” the letter says.

It adds that the use of personal data underpins “vitally important” discoveries, such as the link between smoking in pregnancy and child birth weight and the benefits of breastfeeding. 

“Restricting the use of personal data for these and many other types of study would limit our ability to ensure European policy making is informed by the most robust evidence base,” according to the letter’s authors.

Among the signatories are leaders of national research councils and foundations in 13 European countries.

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Reader's comments (1)

I appreciate the sentiment behind the amendments proposed by Parliament coming as they do with the revelations of invasions of privacy by Government but Holly's article prompted sunday trawling of web for more information. Wellcome Trust webpage refers to me as a "data subject" which seems lower a level life life form than my breakfast ingredients were and that narks me. I did find a far easier to understand explanation at BreastCancerCampaign website Better communication is required from the world of research and I would like to see a Code of practise as to the use and confidentiality of my personal information. Recognition of how it may be used against me when shared with eg financial companies doing "research" etc is urgently required. Signed A Human (not a data subject)

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