Re-contact Following Withdrawal of Minors from Research

Patrinos, Dimitri; Knoppers, Bartha Maria; Kleiderman, Erika; Rahbari, Noriyeh; Laplante, David P.; Wazana, Ashley

doi:10.7202/1087202ar

Cited by 1 publication

(2 citation statements)

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“…Where researchers intend to continue to use participants’ data or samples after they acquire the legal age of capacity or maturity, they should therefore recontact participants and ask them to provide their own consent to the continued storage and sharing of their data and samples. Consent may be obtained either through a formally re-consenting the participant, or simply by notifying them of their participation and of their right to withdraw (notification with opt-out) ( Knoppers et al, 2016 ; Patrinos et al, 2022 ). In certain cases, waivers of recontact may be sought if certain conditions are met ( Knoppers et al, 2016 ; Patrinos et al, 2022 ).…”

Section: Discussion: Typology Of Model Pediatric Consent Clausesmentioning

confidence: 99%

“…Consent may be obtained either through a formally re-consenting the participant, or simply by notifying them of their participation and of their right to withdraw (notification with opt-out) ( Knoppers et al, 2016 ; Patrinos et al, 2022 ). In certain cases, waivers of recontact may be sought if certain conditions are met ( Knoppers et al, 2016 ; Patrinos et al, 2022 ).…”

Section: Discussion: Typology Of Model Pediatric Consent Clausesmentioning

confidence: 99%

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Sharing and Safeguarding Pediatric Data

et al. 2022

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Data sharing is key to advancing our understanding of human health and well-being. While issues related to pediatric research warrant strong ethical protections, overly protectionist policies may serve to exclude minors from data sharing initiatives. Pediatric data sharing is critical to scientific research concerning health and well-being, to say nothing of understanding human development generally. For example, large-scale pediatric longitudinal studies, such as those in the DREAM-BIG Consortium, on the influence of prenatal adversity factors on child psychopathology, will provide prevention data and generate future health benefits. Recent initiatives have formulated sound policy to help enable and foster data sharing practices for pediatric research. To help translate these policy initiatives into practice, we discuss how model consent clauses for pediatric research can help address some of the issues and challenges of pediatric data sharing, while enabling data sharing.

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Section: Discussion: Typology Of Model Pediatric Consent Clausesmentioning

confidence: 99%

Section: Discussion: Typology Of Model Pediatric Consent Clausesmentioning

confidence: 99%