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.
• 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 language | English |
|---|---|
| Article number | e1001959 |
| Number of pages | 8 |
| Journal | PLoS Medicine |
| Volume | 13 |
| Issue number | 2 |
| DOIs | |
| Publication status | Published - 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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