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Personal Privacy

EU’s New Privacy Regulations Could Impact Science

The Infinite Brief
A new European Union (EU) data-protection law, scheduled to take effect on 25 May, could hinder data-sharing initiatives.

Until now, each of the EU countries had its own data protection laws, some offering individuals more security than others. The new law, called the General Data Protection Regulation, harmonizes regulations throughout the EU.

The new law will compel researchers to work differently. It will modify the way researchers design studies, enroll participants and obtain consent, and how they collect, share and store data.

It requires researchers to consider data-protection protocols, termed ‘privacy by design,’ during the design and inception of their studies.

These increased protections on privacy have the potential to make research projects involving data sharing and collaborative work less efficient, more expensive and more complex.

Originally via Spectrum

The sharing of data is crucial to uncovering some of the mysteries of autism. For example, understanding the genetics of autism requires large sample sizes to obtain enough individuals with the same rare variants.

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