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

Svetlana Mykolaivna Gramatiuk, Irina Yuriivna Bagmut, Michael Ivanivich Sheremet, Karine Sargsyan, Alla Mironovna Yushko, Serhii Mykolaevich Filipchenko, Vitaliy Vasilyevich Maksymyuk, Volodimir Volodimirovich Tarabanchuk, Petro Vasilyevich Moroz, Andriy Ivanovich Popovich
Author Information
  1. Svetlana Mykolaivna Gramatiuk: Ukraine Association of Biobank, Institute of Cellular Biorehabilitation, Kharkiv, Ukraine.
  2. Irina Yuriivna Bagmut: Kharkiv Medical Academy of Postgraduate Education, Kharkiv, Ukraine.
  3. Michael Ivanivich Sheremet: Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine.
  4. Karine Sargsyan: Biobank Graz, Medical University of Graz, Graz, Austria.
  5. Alla Mironovna Yushko: Ukraine Association of Biobank, Institute of Cellular Biorehabilitation, Kharkiv, Ukraine.
  6. Serhii Mykolaevich Filipchenko: Kharkiv Medical Academy of Postgraduate Education, Kharkiv, Ukraine.
  7. Vitaliy Vasilyevich Maksymyuk: Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine.
  8. Volodimir Volodimirovich Tarabanchuk: Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine.
  9. Petro Vasilyevich Moroz: Surgical department No.1, Bukovinian State Medical University, Chernivtsi Ukraine.
  10. Andriy Ivanovich Popovich: Department of Pathology (Pathology and Forensic Medicine), Bukovinian State Medical University, Chernivtsi, Ukraine.

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.

Keywords

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MeSH Term

Biological Specimen Banks
Child
Communication
Developing Countries
Disabled Children
Humans
Parents
Risk Management
Surveys and Questionnaires

Word Cloud

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