Abstract
In this issue we offer an insight into the world of pediatric biobanking, a project that matured from our special interest group at ISBER, formed in September 2017. In this special edition, you will read about specific technical, operational, and ethical challenges that are common but exclusive to the pediatric world.
Pediatric and adult biobanking are fundamentally different. A major distinguishing factor is that pediatric diseases are almost exclusively rare and collaboration is crucial for success. The peculiarities are further defined by long-term systematic activities, pre-emptive collection strategies, and embedded practices within health care facilities. More importantly, funding and sustainability cannot rely on pharmaceutical industry trials for major diseases as often seen in the adult world. The low incidence of pediatric diseases and the additional consenting steps make it often unattractive for industry. As suggested, it is challenging to create sustainable models for pediatric biobanks and to determine which elements keep them relevant and vital.
Developmental and inherited disorders are not uncommon in children as well laid out in the article from Texas Children's hospital. Furthermore, the inherited nature of these diseases requires the routine inclusion of parental samples for adequate genomic discovery. Also in contrast to adult biobanks, obtaining adequate sample volumes is not an easy task. In this context, Phoenix Children's, John Hopkins All Children's biobanks and the Children's Hospital at Westmead emphasize the value of properly designed protocols, and the need to explore new markers of disease status. The use of dry blood spot technology safeguarded by national newborn screening programs is also discussed in the setting of pediatric biobanking. As such, many centers opted to integrate their initiative to the hospital workflows to minimize blood draws and reduce invasive procedures.
Pediatric biobanks are also extremely valuable for leading edge translational care. Dr. Walsh reports experience on ovarian tissue preservation and highlights the need for banking samples for future fertility needs.
To better understand the ethics in the pediatric biobanking world, BC Children's Hospital BioBank and Dr. Aaron Goldenberg, ethics and law expert from Case Western Reserve University School of Medicine describe the minefield of consent, assent, and reconsent in pediatric biobanking. Children are considered a vulnerable population and parental consent is required until the age of majority or the capacity of consent of the minor has to be determined. However, one may ask, what is the definition of majority and what is capacity to consent? To further illustrate the point, Conradie et al. report their unique experience in South Africa on how they tackle pediatric biobanking.
Lastly, we want to mention a very special “Experts Speak” article in which three parents give their unique views on their decision of letting their child participate in biobanking.
In summary, one could say that pediatric biobanking requires a great deal of “thinking outside of the box” and a certain degree of creativity to function properly. One should also include a big heart and super powers to convey the children's needs. After all, children are certainly not small adults!
Enjoy your reading and please let us know whether you have any questions or would like to join our special interest group!