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BBMRI.se: BIOBANK PERSPECTIVES NEWSLETTER
In this issue, Jane Reichel gives us her view on how the EU-US Privacy Shield will ensure safe harbours for data transfer in the future. We also report how direct-to-consumer genetic testing companies lack clear consent procedures for biobanking and research. Soon, these tests might become difficult to market and offer in Europe, with the European Commission proposing changes to the European Directive on in vitro diagnostic medical devices.
You can also read about challenges to informed consent posed by rare disease research and how RD-Connect researchers proposes to meet them. Finally, on behalf of the CHIPme COST Action network, we invite you to a workshop on genetic data in public research databases in Bolzano, Italy, this spring.
