Trends in ethical and legal frameworks for the use of human biobanks. - Inserm - Institut national de la santé et de la recherche médicale Accéder directement au contenu
Article Dans Une Revue European Respiratory Journal Année : 2007

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

Résumé

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.

Domaines

Génétique
Fichier sous embargo
Fichier sous embargo
Date de visibilité indéterminée
Loading...

Dates et versions

inserm-00168261 , version 1 (26-08-2007)

Identifiants

Citer

Anne Cambon-Thomsen, Emmanuelle Rial-Sebbag, Bartha Maria Bm Knoppers. Trends in ethical and legal frameworks for the use of human biobanks.. European Respiratory Journal, 2007, 30 (2), pp.373-82. ⟨10.1183/09031936.00165006⟩. ⟨inserm-00168261⟩

Collections

INSERM CERPOP
318 Consultations
0 Téléchargements

Altmetric

Partager

Gmail Facebook X LinkedIn More