Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

An Empirical Survey on Biobanking of Human Genetic Material and Data in Six EU Countries

A. Cambon-Thomseni, I. Hirtzlinii, N. Préaubertiii, C. Dubreuili, J. Duchieri, B. Janseniv, J. Simoniv, P. Lobato de Fariav, A. PerezLezaunvi, B. Visservii, G. Williamsviii, J.C. Gallouxix and on behalf of the EUROGENBANK Consortium

iInserm U 558, Toulouse; iiPanthéon-Sorbonne University, Paris, iiiANAES, Paris, France, ivEuropaeische Akademie fuer Umwelt und Wirtschaft, Lueneburg, Germany, vUniversidade Nova de Lisboa, Escola Nacional de Saude Publica, Lisboa, Portugal, viUnitat de Biología Evolutiva, Departament de Ciències Experimentáis i de la Salut, Universitat Pompeu Fabra, Barcelona, Spain, viiBert Visser, Centre for Genetic Resources, Wageningen, The Netherlands; viiiCenter for Professional Ethics, University of Central Lancashire, Preston, UK, ixLaboratoire DANTE, Université de Versailles-St Quentin en Yvelines and Université Paris II, France


Introduction

Genetic biobanking today: The use of human biological samples as biobanks occurs in a variety of situations from research and technological development to medical diagnosis, clinical follow up and therapeutic activities; biobanking is also an integral part of forensic medicine and sciences and belongs to routine activity in the judiciary context.1-4 So far, mainly disease (and especially rare diseases) studies have motivated collections and they were more often family based than population based. Population based collections have long existed in the context of genetic anthropology and history of world populations but they usually were academic and of modest size. Some rather rare but large epidemiological studies have allowed large number of population samples to be gathered. Genetic epidemiologists have always claimed that knowing population frequencies of polymorphisms studied in disease was an important parameter to take into account for genetic analysis. But there were difficulties both in

Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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