When Children Become Adults: Should Biobanks Re-Contact?

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Abstract

• 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 recontacting 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 recontact 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.
Original languageEnglish
Article numbere1001959
Number of pages8
JournalPLoS Medicine
Volume13
Issue number2
DOIs
Publication statusPublished - Feb 2016

Keywords

  • Adult
  • Biological Specimen Banks
  • Child
  • Confidentiality
  • Humans
  • Informed Consent
  • Parents
  • Journal Article
  • Research Support, Non-U.S. Gov't
  • Review

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