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Parents' perspectives on research involving children

Alina Rodriguez1, Torsten Tuvemo, Mats G Hansson

  • 1Dept. of Psychology, Uppsala University, Sweden. Alina.Rodriguez@psyk.uu.se

Upsala Journal of Medical Sciences
|March 24, 2006
PubMed

Insights

Parents want attending physicians, not regional agencies, to evaluate risks for child research participation. Educating the public on pediatric research can improve parental willingness and participation.

Area of Science:

  • Pediatric Research Ethics
  • Parental Attitudes in Clinical Trials

Background:

  • Children's participation in research is crucial for developing safe, age-appropriate treatments but remains limited.
  • Current ethical trends favor regional agencies for risk evaluation, potentially overlooking parental preferences.

Purpose of the Study:

  • To investigate parental views on who should assess acceptable risk levels for pediatric research participants.
  • To determine parents' willingness to enroll children in research studies.
  • To explore factors influencing this willingness, including medical, sociodemographic, and attitudinal aspects.

Main Methods:

  • A cross-sectional and longitudinal study involving 863 expectant parents (recruited at 19 weeks gestation) and a follow-up of 123 women at 34 weeks gestation.
  • Data collected via routine ultrasound examinations at two hospitals in Uppsala County, Sweden.
  • Main outcome measures included parental ratings of risk-evaluation involvement and willingness to participate in research.

Main Results:

  • The majority of parents (over 80%) believe attending physicians should be fully involved in risk evaluation for pediatric research.
  • Parental attitudes significantly influence willingness to participate, suggesting potential for attitude modification through education.
  • Parents' preferences for physician-led, individual risk assessment contrast with current regional agency-based ethical trends.

Conclusions:

  • Enhancing children's participation in research requires actively involving attending physicians in risk evaluation.
  • Public education is vital to ensure research attitudes are informed by accurate information, potentially increasing willingness.
  • Aligning ethical practices with parental preferences may improve recruitment and ethical considerations in pediatric research.

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