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Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority

Bartha Maria Knoppers, Karine Sénécal, Joanne Boisjoli

    IRB
    |August 9, 2018
    PubMed

    Insights

    Pediatric research participants who reach adulthood should be recontacted for consent to continue in studies. Researchers must balance recontacting duties with study context, feasibility, and participant relationships.

    Area of Science:

    • Bioethics
    • Pediatric Research Ethics

    Background:

    • Children lack the cognitive ability to consent to research participation.
    • Parental or legal guardian consent is required for minors in research.
    • Ethical and legal considerations arise when pediatric research participants reach the age of majority.

    Purpose of the Study:

    • To explore the ethical and legal necessity of recontacting pediatric research participants who attain the age of majority.
    • To determine if re-consent is required for participants enrolled by parents or guardians.
    • To analyze the duties of researchers in obtaining consent from adult participants who were minors at enrollment.

    Main Methods:

    • Analysis of ethical and legal norms in pediatric research consent.
    • Examination of three distinct research contexts: longitudinal studies, clinical trials, and newborn screening.
    • Argumentation based on risk-benefit analysis and feasibility.

    Main Results:

    • Distinctions in recontacting duties are necessary based on risks and benefits.
    • The obligation to recontact must consider research context, feasibility, and cost.
    • The existence or absence of an ongoing relationship with the participant is a key factor.

    Conclusions:

    • Recontacting adult participants for consent is not universally mandated.
    • Decisions regarding recontact should be context-dependent, balancing ethical obligations with practical considerations.
    • Researchers' duties are shaped by the specific nature of the study and participant relationship.

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