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Risk perception and decision processes underlying informed consent to research participation

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  • Reynolds, William W.
  • Nelson, Robert M.

Abstract

According to the rational choice model, informed consent should consist of a systematic, step-by-step evaluation of all information pertinent to the treatment or research participation decision. Research shows that people frequently deviate from this normative model, however, employing decision-making shortcuts, or heuristics. In this paper we report findings from a qualitative study of 32 adolescents and (their) 31 parents who were recruited from two Northeastern US hospitals and asked to consider the risks of and make hypothetical decisions about research participation. The purpose of this study was to increase our understanding of how diabetic and at-risk adolescents (i.e., those who are obese and/or have a family history of diabetes) and their parents perceive risks and make decisions about research participation. Using data collected from adolescents and parents, we identify heuristic decision processes in which participant perceptions of risk magnitude, which are formed quickly and intuitively and appear to be based on affective responses to information, are far more prominent and central to the participation decision than are perceptions of probability. We discuss participants' use of decision-making heuristics in the context of recent research on affect and decision processes, and we consider the implications of these findings for researchers.

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  • Reynolds, William W. & Nelson, Robert M., 2007. "Risk perception and decision processes underlying informed consent to research participation," Social Science & Medicine, Elsevier, vol. 65(10), pages 2105-2115, November.
    • Handle: RePEc:eee:socmed:v:65:y:2007:i:10:p:2105-2115
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    References listed on IDEAS

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    1. Paul Slovic & Melissa L. Finucane & Ellen Peters & Donald G. MacGregor, 2004. "Risk as Analysis and Risk as Feelings: Some Thoughts about Affect, Reason, Risk, and Rationality," Risk Analysis, John Wiley & Sons, vol. 24(2), pages 311-322, April.
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    4. Bettman, James R & Luce, Mary Frances & Payne, John W, 1998. "Constructive Consumer Choice Processes," Journal of Consumer Research, Journal of Consumer Research Inc., vol. 25(3), pages 187-217, December.
    5. Huber, Oswald & Macho, Siegfried, 2001. "Probabilistic set-up and the search for probability information in quasi-naturalistic decision tasks," Risk, Decision and Policy, Cambridge University Press, vol. 6(1), pages 1-16, April.
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    Cited by:

    1. Purva Abhyankar & Barbara A. Summers & Galina Velikova & Hilary L. Bekker, 2014. "Framing Options as Choice or Opportunity," Medical Decision Making, , vol. 34(5), pages 567-582, July.
    2. Christofides, Emily & Dobson, Jennifer A. & Solomon, Melinda & Waters, Valerie & O’Doherty, Kieran C., 2016. "Heuristic decision-making about research participation in children with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 162(C), pages 32-40.
    3. M. Grace Trinidad & Jodyn Platt & Sharon L. R. Kardia, 2020. "The public’s comfort with sharing health data with third-party commercial companies," Palgrave Communications, Palgrave Macmillan, vol. 7(1), pages 1-10, December.
    4. Abhyankar, Purva & Velikova, Galina & Summers, Barbara & Bekker, Hilary L., 2016. "Identifying components in consent information needed to support informed decision making about trial participation: An interview study with women managing cancer," Social Science & Medicine, Elsevier, vol. 161(C), pages 83-91.

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