Opinions of children about participation in medical genetic research

Abstract

Aims: The objective was to evaluate children's opinions about their participation in a large research project.

Methods: Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental causes of asthma). In total 706 questionnaires were collected.

Results: Children's main motivation for participation was wanting to know whether they were healthy or not. Most children could think of no reasons to reconsider participation. Children aged 6-10 years might reconsider participating because they did not know what was going to happen. A third of the children were not informed by anybody about the study. Especially the youngest children indicated a need for a tailored letter (42%). The youngest children were less often asked for their opinion about participation. All children preferred that both parents and children are asked for consent or assent. Children who were not informed or not asked for their opinion seemed less emotionally involved in the study.

Conclusion: While researchers and parents tend to focus their information provision to older children and include them in decision-making, especially the younger children expressed a need for more tailored information and involvement in their participation in research.