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, Orin Levine

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)S172-S179
JournalClinical Infectious Diseases
Volume54
Issue numberSUPPL. 2
DOIs
StatePublished - Apr 1 2012

ASJC Scopus subject areas

  • Microbiology (medical)
  • Infectious Diseases

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