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Consent procedures in pediatric biobanks
Noor Aa Giesbertz1, Annelien L Bredenoord1, Johannes Jm van Delden1
1Department of Medical Humanities, Julius Center, University Medical Center, Utrecht, The Netherlands.
Insights
Pediatric biobanks involve children in consent procedures differently based on their characteristics. Understanding these roles is crucial for ethical biobank governance and ensuring children
Area of Science:
- Bioethics
- Pediatric Research
- Biobanking Governance
Background:
- Ethical guidelines emphasize children's involvement in biobank consent procedures.
- Current practices for allocating roles to children in consent are unclear.
- Understanding child involvement in consent is vital for pediatric biobanks.
Purpose of the Study:
- To investigate the child's role in consent procedures within international pediatric biobanks.
- To identify themes related to children's involvement in the consent process.
- To inform the design of pediatric biobank governance.
Main Methods:
- International multiple-case study design.
- Inclusion of four pediatric biobanks: LifeLines, PIAMA, Young-HUNT3, and ORB/CCLG.
- Analysis of four key themes: motives for involvement, information provision, dissent/assent/consent, and voluntariness.
Main Results:
- Biobank characteristics significantly influence motives for including children in consent.
- Motives for child inclusion shape the nature of their involvement in consent.
- The extent of voluntary decision-making by children is linked to biobank practices.
Conclusions:
- Pediatric biobank governance must consider how biobank characteristics influence child involvement in consent.
- Tailoring consent procedures to biobank specifics can enhance ethical practices.
- Insights gained are valuable for developing robust governance frameworks for pediatric biobanks.
Abstract:
The inclusion of children's samples in biobanks brings forward specific ethical issues. Guidelines indicate that children should be involved in the consent procedure. It is, however, unclear how to allocate an appropriate role for children. Knowledge of current practice will be helpful in addressing this issue. Therefore, we conducted an international multiple-case study on the child's role in consent procedures in pediatric biobanks. Four biobanks were included: (1) LifeLines, (2) Prevention and Incidence of Asthma and Mite Allergy (PIAMA), (3) Young-HUNT3 and (4) the Oxford Radcliffe Biobank contribution to the Children's Cancer and Leukaemia Group tissue bank (ORB/CCLG). Four themes linked to the child's role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntariness of children to participate. We conclude that biobank characteristics influence the biobank's motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure, and the extent to which children are able to make voluntary decisions as part of the consent procedure. This insight is valuable when designing pediatric biobank governance.
