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Personalized assent for pediatric biobanks

Noor A A Giesbertz1,2, Karen Melham3, Jane Kaye4

  • 1Department of Medical Humanities, Division Julius Center, University Medical Center Utrecht, Office Stratenum 6.131, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands. n.giesbertz@umcutrecht.nl.

BMC Medical Ethics
|October 14, 2016
PubMed

Insights

Personalized assent ensures children

Area of Science:

  • Pediatric Biobanking
  • Bioethics
  • Research Ethics

Background:

  • Pediatric biobanking is crucial for advancing biomedical knowledge and healthcare.
  • Ethical considerations, particularly child engagement in consent, are paramount in pediatric biobanking.

Purpose of the Study:

  • To provide guidance on implementing personalized assent in pediatric biobanking.
  • To explore the content and process of personalized assent tailored to individual children.

Main Methods:

  • The paper outlines a framework for personalized assent procedures.
  • It considers both the informational content and the interactive process of assent.

Main Results:

  • Personalized assent respects children's autonomy and enhances their understanding of research.
  • The assent procedure itself is formative, building trust and engagement.

Conclusions:

  • Implementing personalized assent is essential for ethical pediatric biobanking.
  • Investing in personalized assent fosters participant engagement, longitudinal data collection, and research infrastructure stability.

Keywords:
AssentBiological samplesChildrenConsentPediatric biobankResearch ethics

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