Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BIOSHARE-EU)


At a Glance
  • Status: Active Consortium
  • Year Launched: 2010
  • Initiating Organization: European Commission Seventh Framework Programme (FP7)
  • Initiator Type: Government
  • No disease focus
  • Location: Europe

Abstract

BioSHaRE is a consortium of leading biobanks and international researchers from all domains of biobanking science. Its overall aim is to build upon available tools and methods to achieve solutions for researchers to use pooled data from different cohort and biobank studies. This, in order to obtain the very large sample sizes needed to investigate current questions in multifactorial diseases, notably on gene-environment interactions. This aim will be achieved through the development of harmonization and standardization tools, implementation of these tools, and demonstration of their applicability.

Mission

BioSHaRE’s mission is to ensure the development of harmonized measures and standardized computing infrastructures, enabling the effective pooling of data and key measures of life style, social circumstances, and environment, as well as critical subcomponents of the phenotypes associated with common complex diseases. 

Structure & Governance

BioSHaRE has been designed to contain nine interrelated work packages that pull together key areas of “phenotype harmonization and standardization” (here implying phenotype in the broadest sense of the word, to include biomedical phenotype, environment, and socioeconomic factors), bioinformatics tools, partnerships/dissemination, and implementation/roll-out—guided professionally on ethical, legal, and social implications (ELSI) by a team of ELSI professionals and competent coordination/management.

Data Sharing

BioSHaRE researchers are collaborating with P3G, Global Alliance for Genomics and Health, International Rare Diseases Research Consortium, H3Africa, and other organizations on the development of an International Code of Conduct for Genomic and Health-Related Data Sharing. A draft version is available for external review.

Although collaboration for data sharing is increasingly embraced by policy makers and the international biomedical community, still lacking is a common ethical and legal framework to connect regulators, funders, consortia, and research projects to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct.

The Code promotes access to shared data, knowledge, and resources in currently underserved regions.

Points of Contact

Lisette Giepmans
Project Manager
Department of Epidemiology
University Medical Center Groningen
University of Groningen, Hanzeplein 1 (Entrance 24)
PO Box 30.001, 9700 RB Groningen, The Netherlands
phone: +31 50 36 10114 / +31 6 316 23 533

Sponsors & Partners

Helmholtz Zentrum München

Imperial College

Institut National de la Sante et de la Recherche Médicale

Karolinska Institutet

Legal Pathway

McGill University

Medical University of Graz

Norwegian and Technology

Norwegian Institute of Public Health

Ontario Institute for Cancer Research

Public Population Project in Genomics

University Medical Centre Groningen

University of Helsinki

University of Leicester

University of Manchester

University of Oxford


Last Updated: 04/06/2016

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