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How do children and parents make decisions about pediatric clinical research?

Sumeeta Varma1, Tammara Jenkins, David Wendler

  • 1Department of Bioethics, National Institutes of Health Clinical Center, Bethesda, MD 20892, USA.

Journal of Pediatric Hematology/Oncology
|November 8, 2008
PubMed

Insights

Children want to participate in research decisions, but parents are less inclined. This highlights potential family disagreements when seeking assent for pediatric research enrollment.

Area of Science:

  • Pediatric research ethics
  • Clinical trial decision-making

Background:

  • Understanding children's and parents' perspectives on pediatric research participation is limited.
  • Pediatric clinical research requires informed consent and assent processes that respect child autonomy.

Purpose of the Study:

  • To investigate children's and parents' attitudes towards children's involvement in clinical care and research decisions.
  • To identify potential discrepancies in decision-making roles within families for pediatric research enrollment.

Main Methods:

  • A survey was administered to 81 children (aged 7–14) and their parents/guardians across 7 clinical sites.
  • Participants included pediatric patients undergoing cancer or asthma treatment and enrolled in clinical research.

Main Results:

  • Pediatric participants cited altruism and self-benefit as primary motivators for research enrollment.
  • A significant majority of children (90.5%) desired involvement in research decisions, compared to a smaller proportion of parents (61.5%).
  • Disagreements regarding children's decision-making roles were observed between pediatric and adult respondents.

Conclusions:

  • Children's desire for autonomy in research decisions may differ from parental perceptions.
  • Investigators must address potential intrafamilial conflicts when obtaining assent from pediatric participants.
  • Acknowledging and managing these differing views is crucial for ethical pediatric research practices.

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