When Children Become Adults: Should Biobanks Re-Contact?: e1001959

Provenance: Not commissioned; externally peer-reviewed Summary Points * Children's samples are usually included with parental permission, and there is no clear guidance on whether participants should be re-contacted at maturity to obtain their permission for the continued use of their samples....

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Bibliographic Details
Published in:PLoS medicine 2016-02, Vol.13 (2)
Main Authors: Giesbertz, Noor AA, Bredenoord, Annelien L, Delden, J Mvan
Format: Article
Language:English
Subjects:
Adults
Children & youth
Funding
Genetic research
Informed consent
Participation
Pediatrics
R&D
Research & development
Studies
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Summary:Provenance: Not commissioned; externally peer-reviewed Summary Points * Children's samples are usually included with parental permission, and there is no clear guidance on whether participants should be re-contacted at maturity to obtain their permission for the continued use of their samples. * Respect for autonomy and protection of privacy are important arguments in favor of re-contacting participants at maturity. * There are four re-contact policy designs that could be considered, ranging from a thin opt-out policy (participants can withdraw their samples, but the biobank does not re-contact the participant) to a strict opt-in (samples will be destroyed when participants do not give their consent). * We suggest that biobanks adopt a thick opt-out as the default re-contact policy, which means that biobanks re-contact children at maturity and give them the opportunity to withdraw their samples. [...]setting an age limit seems a more feasible route.
ISSN:1549-1277
1549-1676
DOI:10.1371/journal.pmed.1001959