@article{2efb90a017184261b7447e193aa57b61,
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.",
author = "Deluca, {Andrea N.} and Alan Regenberg and Jeremy Sugarman and Murdoch, {David R.} and Orin Levine",
note = "Funding Information: Supplement sponsorship. This article was published as part of a supplement entitled {\textquoteleft}{\textquoteleft}Pneumonia Etiology Research for Child Health,{\textquoteright}{\textquoteright} sponsored by a grant from The Bill & Melinda Gates Foundation to the PERCH Project of Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland. Potential conflicts of interest. All authors: No reported conflicts. Funding Information: Financial support. This work was supported by grant 48968 from The Bill & Melinda Gates Foundation to the International Vaccine Access Center, Department of International Health, Johns Hopkins Bloomberg School of Public Health; the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH) and NIH Roadmap for Medical Research (grant UL1 RR 025005); and the Niarchos Foundation (Bioethics Rapid Response Initiative).",
year = "2012",
month = apr,
day = "1",
doi = "10.1093/cid/cir1063",
language = "English (US)",
volume = "54",
pages = "S172--S179",
journal = "Clinical Infectious Diseases",
issn = "1058-4838",
publisher = "Oxford University Press",
number = "SUPPL. 2",
}