TY - JOUR

T1 - An empirical survey on biobanking of human genetic material and data in six EU countries

AU - Hirtzlin, Isabelle

AU - Dubreuil, Christine

AU - Préaubert, Nathalie

AU - Duchier, Jenny

AU - Jansen, Brigitte J.

AU - Simon, Jürgen

AU - Lobato de Faria, Paula

AU - Perez-Lezaun, Anna

AU - Visser, Bert

AU - Williams, Garrath D.

AU - Cambon-Thomsen, Anne

N1 - 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.

PY - 2003/6/1

Y1 - 2003/6/1

N2 - 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.

AB - 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.

KW - Economics

KW - Empirical survey

KW - Ethics

KW - Europe

KW - Genetic collection management

KW - Human biobanking

KW - Law

UR - http://www.scopus.com/inward/record.url?scp=0037701973&partnerID=8YFLogxK

UR - https://www.mendeley.com/catalogue/80a4079b-b2df-3723-83bd-ad174b1c3694/

U2 - 10.1038/sj.ejhg.5201007

DO - 10.1038/sj.ejhg.5201007

M3 - Scientific review articles

C2 - 12774042

AN - SCOPUS:0037701973

VL - 11

SP - 475

EP - 488

JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

SN - 1018-4813

IS - 6

ER -