Centre for Research Ethics & Bioethics (CRB)

BiboankCloud - Scalable, Secure Storage of Biobank Data (STREP)

The price for sequencing human genomic data has reduced significantly. Since 2004, the cost for has halfed every 4 months. There are massive amounts of data approaching and the storage, analysis and interconnection of data has now become the bottleneck in biobank research.

The scale of the storage requirements needed for genomic information is huge – a single human genome requires analysis of three billion base pairs. The analysis requires both a massive parallel computing infrastructure and data-intensive computing tools and services to perform analyses in reasonable time.

BiobankCloud

Aim

BibankCloud aims to build the first open and viable platform-as-a-service (PaaS) for storage and analysis of digitized genomic data. The project will provide solutions to the problems of secure storage and efficient analysis of massive amounts of biomedical data and also make inter-connection of biobanks possible.

The BiobankCloud PaaS framework will be designed to run primarily on private cloud platforms. It will be built on open-source projects for big data and provide added features to those projects. The platform will be designed in cooperation with BBMRI.eu.

Ethical issues: CRB’s role in the Biobank Cloud

CRB is part of a work package on Regulatory and ethical requirements for data storage and analysis run by Jan-Eric Litton at Karolinska Institutet. Together, we will provide a framework of legal and ethical regulations that enable the BiobankCloud to operate under controlled conditions. This framework will consider the different levels of legal protection in the EU member states.

  • Create guidelines for personal data protection
  • Design an informatics model for personal data protection
  • Design a flexible mechanism for adoption changes in legislation
  • Define a legal framework for collaboration with industry
  • Design an object model for biobank data sharing
  • See if it is possible to develop a user friendly “Disclosure Filter” designed to ensure that connecting the biobanks satisfies data subject requirements and restrictions on EU, national, and institutional levels

Building the PaaS framework

To build the first open platform-as-a-service (PaaS) for Biobanking, and inter-disciplinary team has been assembled, with competencies in different fields of research. The group has:

  • Biobanking expertise from Karolinska Insitutet and Charité University Hospital
  • Bioinformatics expertise from Humboldt University
  • Systems and security expertise from KTH Royal Institute of Technology and the University of Lisbon.

Co-ordinator: Dr. Jim Dowling (jdowling@kth.se) KTH – Royal Institute of Technology, Sweden

funding

EU 7th Framework ProgrammeThis project has received funding from the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement no 317871.

Time table

2012-2015

Contact

Visit the BiobankCloud website

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

Download report

Biobank and registry ethics & law, report