Evaluation of biobank constitution and use: multicentre analysis in France and propositions for formalising the activities of research ethics committees

Montgolfier, Sandrine de; Moutel, Grégoire; Duchange, Nathalie; Callies, Ingrid; Sharara, Lama; Beaumont, Catherine; Feingold, Josué; Hervé, Christian

doi:10.1016/j.ejmg.2004.12.002

Cited by 8 publications

(5 citation statements)

References 11 publications

(11 reference statements)

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“…However, even the experts did not always share their enthusiasm toward all aspects of biobanking (134). Similar findings were noted by ERB members: although they would often disagree on many issues relevant to biobanking, a broad general agreement was nearly always present among them (112,118,142). …”

Section: Resultssupporting

confidence: 79%

Ethical aspects of human biobanks: a systematic review

et al. 2011

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AimTo systematically assess the existing literature on ethical aspects of human biobanks.MethodWe searched the Web of Science and PubMed databases to find studies addressing ethical problems in biobanks with no limits set (study design, study population, time period, or language of publication). All identified articles published until November 2010 were included. We analyzed the type of published articles, journals publishing them, involvement of countries/institutions, year of publication, and citations received, and qualitatively assessed every article in order to identify ethical issues addressed by the majority of published research on human biobanking.ResultsHundred and fifty four studies satisfied our review criteria. The studies mainly came from highly developed countries and were all published in the last two decades, with over half of them published in 2009 or 2010. They most commonly discussed the informed consent, privacy and identifiability, return of results to participants, importance of public trust, involvement of children, commercialization, the role of ethics boards, international data exchange, ownership of samples, and benefit sharing.ConclusionsThe focus on ethical aspects is strongly present through the whole biobanking research field. Although there is a consensus on the old and most typical ethical issues, with further development of the field and increasingly complex structure of human biobanks, these issues will likely continue to arise and accumulate, hence requiring constant re-appraisal and continuing discussion.

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Section: Resultssupporting

confidence: 79%

Ethical aspects of human biobanks: a systematic review

et al. 2011

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“…Therefore, to exploit the full potential of the HIV BioBank, networking between individual biobanks is indispensable[ 3 ]. As a requirement for international cooperation, it is not only necessary to define common standards for sample quality and data formats[ 8 ], but also to consider the differences in ethical, legal and social environments in the different countries of partner biobanks[ 9 , 10 ]. Moreover, BioBank management and governance need to cover a variety of aspects such as compliance with biosafety and biosecurity regulations, as well as keep a balance between sample use and accrual.…”

Section: Correspondencementioning

confidence: 99%

The Spanish HIV BioBank: a model of cooperative HIV research

et al. 2009

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The HIV BioBank represents a novel approach to HIV research that might be of general interest not only for basic and clinical research teams working on HIV, but also for those groups trying to establish large networks focused on research on specific clinical problems. It also represents a model to stimulate cooperative research among large numbers of research groups working as a network on specific clinical problems. The main objective of this article is to show the structure and function of the HIV BioBank that allow it to very efficiently release samples to different research project not only in Spain but also in other countries.

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“…Several countries place more responsibility on research ethics committees in the decision of the necessity of new consent for a protocol explaining further use. However, a large heterogeneity exists between countries [17,44,51,52].…”

Section: Informed Consentmentioning

confidence: 99%

Trends in ethical and legal frameworks for the use of human biobanks

Cambon‐Thomsen¹,

Rial‐Sebbag²,

Knoppers³

2007

European Respiratory Journal

237

204

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Numerous studies of genetic epidemiology and post-genomics in respiratory diseases rely on the use of biobanks, defined as organised biological sample collections with associated personal and clinical data. The use of biobanks is increasing and raises several ethical issues. What are the ethical trends and legal frameworks in the post-genomic era? Are there new issues in relation to the developments of techniques and new study designs? How does this affect the clinician's attitudes and relationship with the patients?The main ethical issues encountered are: informed consent; confidentiality; secondary use of samples and data over time; return of results; and data sharing. Different levels and modalities of dealing with such issues are identified and vary from legally binding measures to ''soft'' regulations, such as ethical recommendations by various committees or professional organisations.A further level of complexity appears with the increasing international dimension of such activities in a context in which national positions vary on those topics. There is a tension between a necessary level of diversity in ethical positions and an indispensable common pedestal of principles and procedures to manage these issues in order to foster research.Current legal and ethical trends favour the facilitation of secondary use of samples, more biobank openness, balanced with a growing attention to dialogue and public/stakeholder consultation, an increased role for research ethics committees and more sophisticated data protection and governance structures.

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Evaluation of biobank constitution and use: multicentre analysis in France and propositions for formalising the activities of research ethics committees

Abstract: ABSTRACTconstitution, use and re-use. In this paper, we suggest concrete elements that could be integrated into the application of the new French law concerning the protection of the human beings participating in research as well as into international recommendations.

Cited by 8 publications

References 11 publications

Ethical aspects of human biobanks: a systematic review

Ethical aspects of human biobanks: a systematic review

The Spanish HIV BioBank: a model of cooperative HIV research

Trends in ethical and legal frameworks for the use of human biobanks

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