Abstract
Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent into pediatric biobanking practice and consider both the content and process of personalized assent. In the discussion we argue that the assent procedure itself is formative. Investing in the procedure should be a requirement for pediatric biobank research. Although personalized assent will require certain efforts, the pediatric (biobank) community must be aware of its importance. The investment and trust earned can result in ongoing engagement, important longitudinal information, and stability in/for the research infrastructure, as well as increased knowledge among its participants about research activity. Implementing personalized assent will both respect the child and support biobank research.
Highlights
Many biobanks, collections of human biological samples stored for medical-scientific research purposes, include biological samples from children [1,2,3]
We argue that provided that other safeguards are in place, i.e. the requirement of parental permission, strict regulations about acceptable risks, supervision of a research ethics committee (REC), the responsibility of researchers to respect their participants and respect for dissent [23], a child may be included in a study without her affirmative agreement
Personalized assent is aimed at engaging children in accordance to their personal capacities and desires
Summary
Collections of human biological samples stored for medical-scientific research purposes, include biological samples from children [1,2,3]. Training the persons who will obtain assent is very important They should know what the aim of assent is, how to offer information to children, how to assess their capacities and wishes and how to act on it [39, 40]. Parents know their child and may have particular insights into interpreting verbal and non-verbal signals. Introducing a presumption of competence for children as a starting point in the research discussion about biobank participation has been suggested as a way to ensure that children are taken seriously [54] Further studies of such an approach and the attitudes of the persons who seek assent will be valuable. Especially when children keep silent, extreme caution must be exercised before proceeding with the study
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