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ResourcesHuman Research EthicsScience needs clarity on Europe’s data-protection law – Nature (May 2018 | Editorial)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Science needs clarity on Europe’s data-protection law – Nature (May 2018 | Editorial)

 


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As a commendable European law on personal data comes into force, the research community must not let excessive caution about data sharing, however understandable, become the default position.

European policymakers have been discussing new rules on data protection for years, and scientists and universities — like everyone else across the continent — are about to see the results. Entering into force on 25 May, a new law known as the General Data Protection Regulation (GDPR), is designed to protect the personal privacy of citizens and will overhaul how personal data are collected, handled, processed and stored. It’s a welcome move to safeguard individuals and is the biggest shake-up of data protection in more than 20 years.

Does your institution provide guidance to its researchers on the GDPR? The University Research Ethics Manual Gary Allen wrote will get a GDPR and National Statement (2018) update during the next few months. We included 10 links to other useful/interesting/topical items.

However, as this journal has noted before, earlier drafts of the law posed a problem for science and the research community. Of particular concern was the issue of consent — the draft language suggested researchers would be required to seek renewed consent to reuse data collected for a different purpose, which could have introduced delays and made some research impractical. But many in the research community worked relentlessly to warn policymakers of the potential harm. In response, officials put in place rules that exempt research from some of the requirements, provided the proper safeguards are in place. Universities and organizations have introduced plans to make sure they are. The bulk of the work should be done.
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The passing of the final GDPR rules is, therefore, a good example of political engagement by researchers and their advocates, and a sensible and informed reaction from policymakers. Those involved, on both sides, deserve great credit. Harmonization of how data can be sourced, stored and used would, in theory, be good for research. It could smooth the difficulties that scientists face when they try to pool analysis of genomic data and tissue samples across national borders. Such sharing could help scientists to organize powerful trials with large numbers of participants.
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