Pediatric biobanks and parents of disabled children associations opinions on establishing children repositories in developing countries
Authors: Gramatiuk Svetlana Mykolaivna ,   Ukraine Association of Biobank, Institute of Cellular Biorehabilitation, Kharkiv, Ukraine,   Ukraine Association of Biobank, Institute of Cellular Biorehabilitation, Kharkiv, Ukraine, Bagmut Irina Yuriivna ,   Kharkiv Medical Academy of Postgraduate Education, Kharkiv, Ukraine, Sheremet Michael Ivanivich ,   Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine,   * 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, Sargsyan Karine ,   Biobank Graz, Medical University of Graz, Graz, Austria, Yushko Alla Mironovna ,   Yaroslav Mudryi National Law University, Kharkiv, Ukraine, Filipchenko Serhii Mykolaevich ,   Kharkiv Medical Academy of Postgraduate Education, Kharkiv, Ukraine, Maksymyuk Vitaliy Vasilyevich ,   Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine, Tarabanchuk Volodimir Volodimirovich ,   Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine, Moroz Petro Vasilyevich ,   Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine, Popovich Andriy Ivanovich ,   Department of Pathology (Pathology and Forensic Medicine), Bukovinian State Medical University, Chernivtsi, Ukraine
Published: April 2021

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.