David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Isabelle Hirtzlin, Christine Dubreuil, Nathalie Préaubert, Jenny Duchier, Brigitte Jansen, Jürgen Simon, Paula Lobatao De Faria, Anna Perez-Lezaun, Bert Visser, Garrath Williams, Anne Cambon-Thomsen & The Eurogenbank Consortium
European Journal of Human Genetics 11:475–488 (2003)
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
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Luciana Caenazzo, Pamela Tozzo & Renzo Pegoraro (2013). Biobanking Research on Oncological Residual Material: A Framework Between the Rights of the Individual and the Interest of Society. [REVIEW] BMC Medical Ethics 14 (1):17.
Xinqing Zhang, Kenji Matsui, Benjamin Krohmal, Alaa Zeid, Vasantha Muthuswamy, Young Koo, Yoshikuni Kita & Reidar K. Lie (2010). Attitudes Towards Transfers of Human Tissue Samples Across Borders: An International Survey of Researchers and Policy Makers in Five Countries. BMC Medical Ethics 11 (1):16-.
Michael A. Igbe & Clement A. Adebamowo (2012). Qualitative Study of Knowledge and Attitudes to Biobanking Among Lay Persons in Nigeria. BMC Medical Ethics 13 (1):27-.
Mary Miu Yee Waye & Connie Ho (2009). Should We Invest in Biobanking in Hong Kong? Using Biobanking for Dyslexic Studies in Hong Kong as an Example. In Margaret Sleeboom-Faulkner (ed.), Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.
Ambroise Wonkam, Marcel Azabji Kenfack, Walinjom Ft Muna & Odile Ouwe‐Missi‐Oukem‐Boyer (2011). Ethics of Human Genetic Studies in Sub-Saharan Africa: The Case of Cameroon Through a Bibliometric Analysis. Developing World Bioethics 11 (3):120-127.
Margaret Sleeboom-Faulkner (2009). Collecting Families : An Institutional Approach to Human Genetic Biobanking in Indonesia. In , Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.
Christiane Auray-Blais & Johane Patenaude (2006). A Biobank Management Model Applicable to Biomedical Research. BMC Medical Ethics 7 (1):1-9.
Margaret Sleeboom-Faulkner (2009). Human Genetic Biobanking in Asia : Issues of Trust, Wealth and Ambition. In , Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.
Margaret Sleeboom-Faulkner (ed.) (2009). Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.
Sean Cordell (2011). The Biobank as an Ethical Subject. Health Care Analysis 19 (3):282-294.
Richard A. Spinello (2004). Property Rights in Genetic Information. Ethics and Information Technology 6 (1):29-42.
Wen-Ching Sung (2009). Within Borders : Risks and the Development of Biobanking in China. In Margaret Sleeboom-Faulkner (ed.), Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.
Michelle N. Meyer (2010). Against One-Size-Fits-All Research Ethics. Hastings Center Report 40 (5):10-11.
Added to index2011-01-29
Total downloads7 ( #198,752 of 1,168,017 )
Recent downloads (6 months)2 ( #85,305 of 1,168,017 )
How can I increase my downloads?