Paediatric biobanking: Dutch experts reflecting on appropriate legal standards for practice.

ABSTRACT: Large sets of data and human specimens, such as blood, tumour tissue and DNA, are deposited in biobanks for research purposes, preferably for long periods of time and with broadly defined research aims. Our research focuses on the retention of data and biological materials obtained from children. However important such paediatric biobanks may be, the privacy interests of the children involved and the related risks may not be ignored. The privacy issues arising from paediatric biobanks are the central focus of this article. We first review the international regulations that apply to biobanks and then summarise viewpoints expressed by experts in a round-table discussion. We confine ourselves here to two normative questions: (1) How much control should children's parents or legal representati

SUBMITTER: Kranendonk EJ 

PROVIDER: S-EPMC5219008 | biostudies-literature | 2017 Jan

REPOSITORIES: biostudies-literature