An empirical survey on biobanking of human genetic material and data in six EU countries

Research output: Journal contributionsScientific review articlesResearch

Authors

  • Isabelle Hirtzlin
  • Christine Dubreuil
  • Nathalie Préaubert
  • Jenny Duchier
  • Brigitte J. Jansen
  • Jürgen Simon
  • Paula Lobato de Faria
  • Anna Perez-Lezaun
  • Bert Visser
  • Garrath D. Williams
  • Anne Cambon-Thomsen

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries (France, Germany, the Netherlands, Portugal, Spain and the UK) were collected as part of a European Research Project examining human and non-human biobanking (EUROGENBANK, coordinated by Professor JC Galloux). A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised (identified or identifiable samples). Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project.

Original languageEnglish
JournalEuropean Journal of Human Genetics
Volume11
Issue number6
Pages (from-to)475-488
Number of pages14
ISSN1018-4813
DOIs
Publication statusPublished - 01.06.2003

Bibliographical note

The authors thank the EU Commission for financial support (BIOTECH EU Contract N1 BIO4-CT98-0570) and local collaborators who have helped collecting and analysing data. They gratefully acknowledge all the institutions concerned with biobanking of human samples and genetic data, which agreed to be interviewed and to devote time to answering questionnaires. This work was also supported by Genopole-Toulouse Midi-pyrénées.

    Research areas

  • Economics, Empirical survey, Ethics, Europe, Genetic collection management, Human biobanking
  • Law

DOI

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