Paediatric biobanks: What makes them so unique?

Abstract

Paediatric biobanks store and organise the biological material of children. They are an invaluable resource for the study of the development, health and behaviour of children. International norms for the management of adult biobanks exist, but paediatric biobanks require distinct policies to account for the needs of children, their general incapacity, and their intellectual development throughout the life of the biobank. Because of their particular nature we revisit the issues of consent, the return of research results, and privacy, and discuss how each could be modulated in the paediatric context. We recognize that such modifications entail further financial and logistical complications but maintain that it is essential that paediatric biobanks consider these issues and adapt their biobanks management policies accordingly, rather than extrapolate the current adult-based norms and jeopardise the rights of child participants.

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

“…This inclusion of more children in genomic research and the increase in genome-based testing in clinical practice create new challenges for pediatric health-care researchers and practitioners, especially as genomic findings and interpretations become increasingly nuanced (Hens et al 2011;Kohane 2011;Samual et al 2012). At the same time, these challenges provide the opportunity for thoughtful engagement, reflection, and response across stakeholder communities (Bush and Rothenberg 2012;Driessnack and Gallo 2011;Hudson 2011;Lantos et al 2011).…”

Clarifying assent in pediatric research

“…20 This is not surprising as no consensus exists about how assent should be interpreted and implemented in biomedical research. [21][22][23][24][25][26][27][28] The importance of conducting ethically sound pediatric biobank research 29 and the rapid developments in this field stress the need to scrutinize the concept of assent in pediatric biobank research. 14,18 Here, we will provide a conceptual analysis of assent, discuss the different underlying ethical principles and its, in our opinion, most tenable interpretation in pediatric research.…”

Returning Results: Let's Be Honest!

“…First, ''financial and logistical complications'' (Samuel et al, 2012) can be minimized, thanks to scientific advances. Technical solutions exist, for example, tools to compare and manage results and the process of returning them to participants' treating physicians (Bemmels et al, 2012).…”