BBMRI-NL’s web application for GDPR Records, DPIA & Compliance
One of the major novelties under the General Data Protection Regulation (GDPR), which will come into effect on May 25th, 2018, is the requirement to demonstrate compliance with the GDPR. To assist with this, BBMRI-NL has developed a web application for GDPR Records, Data Protection Impact Assessment (DPIA) & Compliance.
The app is designed specifically for processing personal data for scientific research purposes in the field of biobanks. Once the recording requirements set out by the implementation regulation (UAVG) are fully adopted, the application will be modified to include these as well. BBMRI ERIC is considering an English translation of the application.
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Podium: the BBMRI-NL request portal for all your samples and data
The exchange of samples and data from biobank to researcher, or from hospital/lab to biobank, is traditionally managed via e-mail, fax or telephone. However, this approach lacks a proper ‘track and trace’ and audit trail for specimens, which impedes fast recovery of lost samples. Within the BBMRI-NL 2.0 project, we have developed a generic request portal, called Podium, for requesting samples and data. This portal facilitates an optimized end-to-end request process for both the requesters and the organizations involved.
We evaluated existing request workflows (using actual cases) in the Netherlands (e.g. the Parelsnoer Institute (PSI), Pathological Anatomical National Automated Archive (PALGA), Lifelines, Genome of the Netherlands (GO-NL), Haemato Oncology Foundation for Adults in the Netherlands (HOVON) and the PHARMO Institute). We then used these best practices to create an extended generic process model for sample and data requests.
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Dealing responsibly with ethical, legal and societal issues (ELSI) in Personalized Medicine research
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Marjanka Schmidt (Netherlands Cancer Institute), leader of the ELSI Servicedesk (left) and Susanne Rebers (Netherlands Cancer Institute), coordinator of the ELSI Servicedesk (right)
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Personalized Medicine promises to bring powerful new ways of improving treatment and healthcare, tailored to individual patients. At the same time, this leads to many different ethical, legal and societal issues (ELSI). For example, the new privacy legislation or the handling of incidental findings. The Personalized Medicine Programme of ZonMw (co-funded by health insurer Zilveren Kruis and the Dutch Cancer Society) will set up an ELSI Servicedesk, developed by BBMRI-NL and Federa-COREON. This Servicedesk offers guidance and answers to the ethical, legal and societal questions faced by life science professionals, policymakers and patients. The first online version of the ELSI Servicedesk is expected to become operational in February 2018 and the helpdesk in June 2018.
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