2021, Volume 14, Issue 1, pp 50 – 55

Pediatric biobanks and parents of disabled children associations opinions on establishing children repositories in developing countries

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Authors and Affiliations

* Corresponding Author: Michael Ivanivich Sheremet, Surgery Department No. 1 of Bukovinian State Medical University, Ukraine. 191 Holovna str., 58018, Chernivtsi, Ukraine. Phone: 0956064607. E-mail: mihayl71@gmail.com

Abstract

Pediatric biobanks are an indispensable resource for the research needed to bring advances in personalized medicine into pediatric medical care. It is unclear how or when these advances in medical care may reach children, but it is unlikely that research in adults will be adequate. We conducted the screening for a hypothetic problem in various European and American pediatric biobanks based on online surveys through e-mail distribution based on the Biobank Economic Modeling Tool (BEMT) questionnaire model. Participants in the survey had work experience in biobanking for at least 3 years or more. Contact information about the survey participants was confirmed on the social networks profiles (LinkedIn), as well as on generally available websites. First, we tried creating a model which can show the pediatric preclinical and basic clinical phase relationship and demonstrate how pediatric biobanking is linked to this process. Furthermore, we tried to look for new trends, and the final goal is to put the acquired knowledge into practice, so medical experts and patients could gain usable benefit from it. We concluded that leading positions must take into account ethical and legal aspects when considering the decision to include children in the biobank collection. However, communication with parents and children is essential. The biobank characteristics influence the biobank’s motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure and the extent to which children are able to make voluntary decisions as part of the consent procedure.

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About this article

PMC ID: 7982269
PubMed ID: 33767785
DOI: 10.25122/jml-2020-0106

Article Publishing Date (print): Jan-Feb 2021
Available Online: 

Journal information

ISSN Printing: 1844-122X
ISSN Online: 1844-3117
Journal Title: Journal of Medicine and Life

Copyright License: Open Access

This article is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use and redistribution provided that the original author and source are credited.


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