Data overprotection
Draft European rules governing privacy threaten to hamper medical research.
23 June 2015
"The regulations proposed in 2012 by the commission allow the use of personal data only after an individual has given “specific, informed and explicit” consent. It is, after all, directed primarily at potential misuse of data gathered at websites or apps such as Facebook. But it made exceptions for health research because it recognized that such work depends on broad models of consent in which participants can agree for their data to be used in a variety of research studies, and that — subject to suitable safeguards — the data can be stored for future use.
Parliamentary amendments agreed last year changed the emphasis, and in doing so removed the exemption for research. If accepted, the amendments would require consent from participants for each new study. That would impede research."
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