Journal Article

Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project

Andrea N. DeLuca, Alan Regenberg, Jeremy Sugarman, David R. Murdoch and Orin Levine

in Clinical Infectious Diseases

Published on behalf of Infectious Diseases Society of America

Volume 54, issue suppl_2, pages S172-S179
Published in print April 2012 | ISSN: 1058-4838
Published online April 2012 | e-ISSN: 1537-6591 | DOI: http://dx.doi.org/10.1093/cid/cir1063
Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project

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The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a highly valuable resource of biospecimens that may be used to inform future studies on the causes of pneumonia. Designing a biorepository for this complex project was done in collaboration with a wide range of experts including bioethicists. In this paper, we describe the most significant ethical issues encountered related to the biorepository, focusing on its structure and informed consent. We also outline the proposed approach to the PERCH biorepository, which was designed to be sensitive to the ethical, practical, and cultural challenges inherent to the study. Through this process, we concluded that biorepository governance plans and strategies for managing informed consent should be implemented in a way to allow for careful study in order to better understand the attitudes of and impact on the stakeholders involved in the study.

Journal Article.  4311 words. 

Subjects: Infectious Diseases ; Immunology ; Public Health and Epidemiology ; Microbiology

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