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

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.

Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries

“…To note, most Ukrainian biobanking organisations possess multiple collection sites model partnering with numerous clinical sites and investigators which determines both benefits and drawbacks. 25 The main proses of the muti-collaborative model are the scale of sample collection and geographic diversity being open for every subject who wills to participate in biobanking projects. 26 To reduce operating costs and optimise sample quality, some Ukrainian biobanks operate as contract research organisations engaging third parties for the provision of such essential services as sample collection, tissue processing and specimen storage, database hosting and storing.…”

Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance

“…Samples include tissue, blood, urine, and genetic data derived from such sources that come from clinical research participants or as by-products with consent from patients receiving treatment. While the exact numbers of biobanks that exist globally are unknown, interest in the establishment and ethical governance of such entities grows, as evidenced by increased weight given to relevant accreditation, training, and scholarly discourse [ 1 , 2 ]. While only a proportion of existing biobanks hold material derived from children, pediatric biobanking is arguably the most efficient means for advancing critical clinical research given the limited availability of pediatric samples [ 2 ].…”

“…While the exact numbers of biobanks that exist globally are unknown, interest in the establishment and ethical governance of such entities grows, as evidenced by increased weight given to relevant accreditation, training, and scholarly discourse [ 1 , 2 ]. While only a proportion of existing biobanks hold material derived from children, pediatric biobanking is arguably the most efficient means for advancing critical clinical research given the limited availability of pediatric samples [ 2 ]. Only pediatric samples can assist researchers to understand and treat childhood diseases, human development, and the gene-environment interaction [ 2 , 3 ].…”

“…While only a proportion of existing biobanks hold material derived from children, pediatric biobanking is arguably the most efficient means for advancing critical clinical research given the limited availability of pediatric samples [ 2 ]. Only pediatric samples can assist researchers to understand and treat childhood diseases, human development, and the gene-environment interaction [ 2 , 3 ]. Despite this, international regulation governing pediatric biobanking is generally inconsistent and unclear owing to the varying laws, policies, and guidance documents that regulate biological sample removal, biobank facilities, access to and privacy of genetic data, and the issues associated with lack of capacity to consent by most pediatric participants [ 4 , 5 ].…”