Paediatric biobanks: Opinions, feelings and attitudes of parents towards the specimen donation of their sick children to a hypothetical biobank

Abstract

Over the last years, the storing of biological materials from children for research purposes in biobanks has become the subject of an intense debate in the scientific and ethical communities on a global level. Paediatric biobanks are an important resource for the development of translational research. At the same time, paediatric biobanks are ethically 'sensitive' due to the unique issues they raise. In this study, we explore opinions, feelings and attitudes of parents towards the specimen donation of their sick children to a hypothetical biobank. According to a qualitative methodology based on focus groups, we analysed parents' views, perceptions and inclinations towards typical ethical, legal and social aspects of paediatric biobanks such as proxy consent, minor assent, privacy protection and return of results. Our study confirms the need for specific policies dedicated to paediatric biobanks by highlighting how the nature of the disease affecting children may influence the parents' opinions and decisions towards the enrolment of their children in biobank-based research studies.