title: Bioethical considerations in developing a biorepository for the Pneumonia Etiology Research for Child Health project.
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.
authors.affiliation: Department of International Health, International Vaccine Access Center, Johns Hopkins Bloomberg School of Public Health, 855 N Wolfe St, Ste 600, Baltimore, MD 21218, USA. andeluca@jhsph.edu
authors.forename: Andrea N
authors.initials: AN
authors.lastname: DeLuca
authors.forename: Alan
authors.initials: A
authors.lastname: Regenberg
authors.forename: Jeremy
authors.initials: J
authors.lastname: Sugarman
authors.forename: David R
authors.initials: DR
authors.lastname: Murdoch
authors.forename: Orin
authors.initials: O
authors.lastname: Levine
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics* / Q000458:organization & administration; D002648:Child; D002669:Child Welfare; D055812:Community-Based Participatory Research / Q000458:organization & administration; D003469:Culture; D015340:Epidemiologic Research Design; D028744:Ethics Committees, Research / Q000941:ethics* / Q000458:organization & administration; D006801:Humans; D007258:Informed Consent; D007391:International Cooperation; D011014:Pneumonia / Q000209:etiology*; D013048:Specimen Handling / Q000941:ethics / Q000379:methods