But worryingly, given the general thrust towards making sensitive health data more accessible to third parties, the committee does not seem to have a very fine-grained grasp of data protection in a health context — where, for example, datasets can be extremely difficult to render truly anonymous given the level of detail typically involved.
As Bernet explains, "these companies have a strong policy not to be mentioned in the context of data protection or privacy – they are all denying to be part of it".
The Biobanking and BioMolecular resources Research Infrastructure (BBMRI-ERIC) has recently published its position with regard to frequently asked questions in the context of data protection for biobanks under the new GDPR [10].
"In this context, the EU data protection authorities are committed to act and continue their investigations.
Regulated data items that are protected by data protection regulations.
Data protection legislation is not about protecting data; its about protecting people.
"I feel that these issues must be raised in a European Union context at minister's level and should be discussed in the context of ongoing discussions on the EU data protection regulation," Leutheusser-Schnarrenberger writes, adding she wants it discussed at the next meeting of justice and home affairs ministers in July.
Findings from this study have potential implications for recruitment and consenting practices when seen against the context of recent changes to ethical requirements and data protection.
The case study raises ethical questions about the storage, collection and sharing of data and explores whether the data protection models prevalent in the developed world are applicable in a development context.
In addition, the nascent stage of cloud computing, particularly in the genomics context, leads to uncertainty about how existing laws, especially privacy and data protection laws, will be applied.
She said the publication of today's Communication is aimed at making prior data protection guidance published by DPAs more easily available, as well as putting it in the context of the ECJ's ruling.
