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Re-consent practices in biobanks in Japan: current status and stakeholder perspectives

Hiroko Terui-Kohbata1,2, Hiyori Ueda3, Masayuki Yoshida4,3

  • 1Life-Science and Bioethics Research Center, Institute of Science Tokyo, Tokyo, Japan. kohbbec@tmd.ac.jp.

Journal of Community Genetics
|July 17, 2025
PubMed

Insights

Re-consent for pediatric research participants transitioning to adulthood is crucial but challenging. Japanese biobanks show low re-consent rates, highlighting ethical and logistical hurdles in genomic data sharing.

Area of Science:

  • Genomics
  • Biobanking
  • Pediatric Research

Background:

  • Longitudinal pediatric biobank research requires participant re-consent upon reaching adulthood.
  • Re-consent ensures continued informed participation and ethical data sharing.
  • Genomic data sharing in rare pediatric diseases necessitates robust consent processes.

Purpose of the Study:

  • To examine current re-consent practices in Japanese biobanks for pediatric research.
  • To explore stakeholder opinions on genomic data sharing and re-consent methods.
  • To identify ethical and logistical challenges associated with re-consent acquisition.

Main Methods:

  • Survey of 41 Japanese biobanks regarding pediatric sample handling and re-consent.
  • Analysis of current re-consent acquisition practices and methods.
  • Exploration of stakeholder perspectives on genomic data sharing.

Main Results:

  • Only 25% of surveyed biobanks handling pediatric samples obtained re-consent.
  • All re-consent was obtained via written informed consent.
  • 71% of respondents acknowledged the necessity of re-consent, but methods varied.
  • Stakeholders cited privacy concerns and administrative burden as key challenges.

Conclusions:

  • Low re-consent rates in Japanese biobanks indicate significant challenges in pediatric genomic research.
  • Ethical and logistical issues must be addressed to balance data sharing with participant rights.
  • Developing optimal re-consent strategies requires ongoing stakeholder engagement and policy discussions.

Keywords:
AutonomyBiobankGenome data-sharingPediatric researchRe-consent

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