Data protection regulation GDPR, includes exemptions to allow research on anonymised data. In this exclusive interview with Shawn Jensen, CEO of data privacy company Profila, Sabine Louët finds out about the implications of the new GDPR regulations for citizens and for researchers. The regulation was adopted on 27th April 2016 and is due to enter into force on 25th May 2018. In essence, it decentralises part of the data protection governance towards data controllers and people in charge of processing the data.
As part of the interview, Jensen explains the exemptions that have been bestowed upon certain activities, such as research, so that scientists can continue to use anonymised data for their work while having to ensure the privacy of the data required by the law.
In fact, the regulations are designed to preserve the delicate balance between the need to protect the rights of data subjects in a digitalised and globalised world and yet making it possible to processing of personal data for scientific research, as explained in a recent study by Gauthier Chassang, from the French National Health Research Institute INSERM. The study author concludes:
“While the GDPR adopts new specific provisions to ensure adapted data protection in research, the field remains widely regulated at national level, in particular, regarding the application of research participants’ rights, which some could regret. ”
However, Chassang pursues,
“the GDPR has the merit to set up clearer rules that will positively serve the research practices notably regarding consent, regarding the rules for reusing personal data for another purpose, assessing the risks of data processing …” In addition, he continues, “for the first time, the GDPR refers to the respect of ethical standards as being part of the lawfulness of the processing in research” and “opens new possibilities for going ahead in the structuring of data sharing in scientific research with measures encouraging self-regulation development.”
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