Toward a roadmap in global biobanking for health
journal contributionposted on 2012-10-24, 09:23 authored by JR Harris, P Burton, BM Knoppers, K Lindpaintner, M Bledsoe, AJ Brookes, I Budin-Ljøsne, R Chisholm, D Cox, M Deschênes, I Fortier, P Hainaut, R Hewitt, J Kaye, JE Litton, A Metspalu, B Ollier, LJ Palmer, A Palotie, M Pasterk, M Perola, PH Riegman, GJ van Ommen, M Yuille, K Zatloukal
Biobanks can have a pivotal role in elucidating disease etiology, translation, and advancing public health. However, meeting these challenges hinges on a critical shift in the way science is conducted and requires biobank harmonization. There is growing recognition that a common strategy is imperative to develop biobanking globally and effectively. To help guide this strategy, we articulate key principles, goals, and priorities underpinning a roadmap for global biobanking to accelerate health science, patient care, and public health. The need to manage and share very large amounts of data has driven innovations on many fronts. Although technological solutions are allowing biobanks to reach new levels of integration, increasingly powerful data-collection tools, analytical techniques, and the results they generate raise new ethical and legal issues and challenges, necessitating a reconsideration of previous policies, practices, and ethical norms. These manifold advances and the investments that support them are also fueling opportunities for biobanks to ultimately become integral parts of health-care systems in many countries. International harmonization to increase interoperability and sustainability are two strategic priorities for biobanking. Tackling these issues requires an environment favorably inclined toward scientific funding and equipped to address socio-ethical challenges. Cooperation and collaboration must extend beyond systems to enable the exchange of data and samples to strategic alliances between many organizations, including governmental bodies, funding agencies, public and private science enterprises, and other stakeholders, including patients. A common vision is required and we articulate the essential basis of such a vision herein.
This work was supported through funds from the European Union's Seventh Framework Programme (FP7/2007-2013), ENGAGE Consortium, grant agreement HEALTH-F4-2007-201413 to JRH and IBL; BioSHaRE-EU, grant agreement HEALTH-F4-2010-261433 to JRH, PB, AJB, and IBL; through funds from Biobank Norway – a national infrastructure for biobanks and biobank-related activity in Norway – funded by the Norwegian Research Council (NFR 197443/F50) to JRH and IBL. We thank the contribution of the Public Population Project in Genomics (P3G) and biobanking-related work from FP7 Grant Agreement number: 212111 (BBMRI) to KZ, and MY, and the Austrian Genome Programme GEN-AU to KZ. BMK acknowledges the Canada Research Chair in Law and Medicine; Genome Canada/Genome Quebec GJBvO gratefully acknowledges support by a grant from the Ministry of Education, through the Netherlands Organization for Scientific Research NWO for the establishment of BBMRI-NL, a consolidated Netherlands Biobanking infrastructure. JEL gratefully acknowledges support by The Swedish Research Council Grant agreement 829-2009-6285 for the BBMRI.SE project. AM was supported by EU RDF Centre of Excellence in Genomics; The Estonian Biobank at EGC University of Tartu is funded by Ministry of Social Affairs and Ministry of Education and Research and EU FP7 project OPENGENE. Other sources of support for this work are the Wellcome Trust 096599/2/11/Z to JK, The Medical Research Council (UDBN, COPDmap), IMI (U-biopred) and Technology Strategy Board (STRATUM, ACROPOLIS) to MY, and The Medical Research Council (COPDmap) EU FP7 and (GEN2PHEN (Grant # 200754) to AJB.
CitationHarris, J., Burton, P., Knoppers, B. et al. Toward a roadmap in global biobanking for health. Eur J Hum Genet 20, 1105–1111 (2012). https://doi.org/10.1038/ejhg.2012.96
Author affiliation/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/MBSP Non-Medical Departments/Department of Genetics
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