Heuristic decision-making about research participation in children with cystic fibrosis

Abstract

Rationale: Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children.

Objective: We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness.

Methods: To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013.

Results: We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research.

Conclusion: Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational.

Keywords: Children; Cystic fibrosis; Decision-making; Heuristics; Informed consent; Research ethics.