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Developing a policy for paediatric biobanks: principles for good practice

Kristien Hens1, Carla E Van El, Pascal Borry

  • 1Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands. k.hens@maastrichtuniversity.nl

European Journal of Human Genetics : EJHG
|June 21, 2012
PubMed

Insights

Including minors in biobank research offers significant health benefits, but requires specific ethical protections due to their vulnerability. This study outlines principles for the ethical inclusion of children in biobanking and research.

Area of Science:

  • Bioethics
  • Pediatric Research
  • Biotechnology

Background:

  • Minors are a vulnerable population requiring special protections in research.
  • Biobanking children's biological samples presents unique ethical challenges compared to adult biobanks.
  • Children's capacity to understand and consent to research varies with age.

Purpose of the Study:

  • To establish principles for the ethical inclusion of minors in biobank research.
  • To address specific ethical considerations unique to pediatric biobanking.
  • To guide policymakers, biobankers, and researchers on best practices for handling children's tissue samples.

Main Methods:

  • Review of ethical principles relevant to pediatric biobanking.
  • Analysis of issues concerning benefits, subsidiarity, consent, proportionality, and return of results.
  • Development of best practice guidelines for policy makers and researchers.

Main Results:

  • Identified key ethical issues in pediatric biobank research.
  • Proposed principles for good practice focusing on consent and sample handling.
  • Highlighted the need for age-appropriate consent and protective measures.

Conclusions:

  • Ethical frameworks are crucial for incorporating minors into biobank research.
  • Adherence to principles of benefit, subsidiarity, consent, proportionality, and return of results is essential.
  • Implementation of these principles requires consideration of jurisdictional differences.

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