Stakeholder views about participating in paediatric biobanks: a narrative review
Abstract
Scientific and medical research with children is essential to the development of therapies for use in younger patients. Paediatric biobanking using samples from minors provides a critical and expanding resource for health-related research. Such research, however, raises important ethical, legal and social issues (ELSI), and highlights the need for appropriate frameworks for practice developed through stakeholder consultation. This paper reviews the current literature on the views of stakeholders on paediatric biobanking and the ethical, legal and social implications of such research. A narrative review of empirical studies of stakeholder views on paediatric biobanking was conducted. Twenty two papers were included in the final review. The majority of the studies reviewed (thirteen) were not based on actual biobanks and few included the views of children. While there was broad recognition of the importance of children’s assent to biobanking research, parental consent was widely accepted as sufficient. Children and some parents demonstrated a desire for re-consent and the right to withdraw at age 18. Parents often wanted the option of receiving their children’s genetic results, though the return of results was seen as potentially infringing on the privacy and autonomy of the child. All of the studies highlighted a commitment to avoid harm and minimise burdens to child participants and the need for benefits to outweigh risks. Despite the rising social expectation that research participants’ voices be heard and an increasing need for paediatric biobanks, there is a paucity of empirical research conducted to date on children’s views and the experiences as participants.
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