Guidelines such as Code of Federal Regulations and WMA Declaration of Helsinki recommend expressed consent from the pediatric population before inclusion of their health data in biobanks. This issue has brought forth many ethical concerns especially with regards to the child’s role in these procedures which is discussed in an article published in European Journal of Human Genetics. The authors of this article provide the results of an international multiple-case study which included four biobanks addressing diverse health concerns with the collection of a variety of data from the pediatric population.
They addressed “four themes linked to the child’s role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntarism of children to participate.” This study recognizes the motives to involve consent of the child where respect for the child as an intrinsic motive to involve children while adherence to regulation was recognized by all as important. The authors also detail how personal verbal information is utilized for informing the child even though it is not mentioned in the regulation. While the authors say that assent and consent differs between biobanks, the question of how respecting dissent – is followed by the biobanks is unclear. The authors also show that although children agree to participate in biobanks to different reasons, coercion from parents may be the overarching one.
The authors believe that these “insight(s) (are) valuable when designing pediatric biobank governance.”