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Risk perception and decision processes underlying informed consent to research participation
William W Reynolds1, Robert M Nelson
1Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, Center for Research Integrity, CHOP North Room 1511, 3405 Civic Center Boulevard, Philadelphia, PA 19104, USA. reynoldsw@email.chop.edu
Social Science & Medicine (1982)
|August 11, 2007
Summary
Adolescents and parents often use intuitive shortcuts, not systematic evaluation, when deciding on research participation. Affective responses, not probability, heavily influence their risk perception and decisions.
Area of Science:
- Medical Ethics
- Decision Science
- Adolescent Health
Background:
- The rational choice model posits systematic evaluation for informed consent in research.
- However, individuals often use heuristics (decision shortcuts) instead of this normative model.
Purpose of the Study:
- To understand risk perception and decision-making in adolescents and parents regarding research participation.
- Focus on diabetic and at-risk adolescent populations.
Main Methods:
- Qualitative study involving 32 adolescents and 31 parents from two Northeastern US hospitals.
- Participants considered hypothetical research participation scenarios and associated risks.
Main Results:
- Adolescents and parents frequently employed heuristic decision-making processes.
- Perceptions of risk magnitude, influenced by affect, were more central than probability assessments.
- Intuitive and rapid formation of risk perception was observed.
Conclusions:
- Decision-making for research participation is often heuristic, driven by affect and perceived magnitude rather than probability.
- Findings have implications for researchers designing informed consent processes for adolescents and at-risk groups.
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