Abstract
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.
SERIES “GENETICS OF ASTHMA AND COPD IN THE POSTGENOME ERA”
Edited by E. von Mutius, M. Kabesch and F. Kauffmann
Number 6 in this Series
Footnotes
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Previous articles in this series: No. 1: Le Souëf PN, Candelaria P, Goldblatt J. Evolution and respiratory genetics. Eur Respir J 2006; 28: 1258–1263. No. 2: Martinez FD. Genes, environments, development and asthma: a reappraisal. Eur Respir J 2007; 29: 179–184. No. 3: Shapiro SD. Transgenic and gene-targeted mice as models for chronic obstructive pulmonary disease. Eur Respir J 2007; 29: 375–378. No. 4: Holgate ST, Davies DE, Powell RM, Howarth PH, Haitchi HM, Holloway JW. Local genetic and environmental factors in asthma disease pathogenesis: chronicity and persistence mechanisms. Eur Respir J 2007; 29: 793–803. No. 5: Hall IP, Sayers I. Pharmacogenetics and asthma: false hope or new dawn? Eur Respir J 2007; 29: 1239–1245.
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