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Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research

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  • De Vries, Raymond
  • Stanczyk, Aimee
  • Wall, Ian F.
  • Uhlmann, Rebecca
  • Damschroder, Laura J.
  • Kim, Scott Y.

Abstract

"Deliberative democracy" is an increasingly popular method for soliciting public input on health care policies. There are a number of ways of organizing deliberative democracy (DD) sessions, but they generally involve gathering a group of citizens, supplying them with information relevant to the policy in question, giving them time to interact with each other and with experts in the policy area, and collecting their informed and considered opinions. As the method has become more widely used, some have questioned the quality of the public input it generates. Although theorists of DD agree that "good" input - i.e., input that is the product of careful and thorough reflection - is an essential aspect of useful and effective deliberation, few have actually measured the quality of deliberative sessions. As part of a DD project organized to help guide policies on the morally complex question of allowing surrogate permission to enroll persons with dementia in medical research, we developed and tested measures of "quality of deliberation." After a brief discussion of the substantive results of our research - survey data from participants in the DD sessions and control groups showed a significant change in participants' attitudes toward surrogate consent - we examine the process by which this change occurred, describing and assessing the characteristics of our DD sessions. We use both quantitative and qualitative data from our DD sessions, conducted in southeastern Michigan, United States, to examine four dimensions of the quality of deliberation: 1) equal participation by all members of the session, 2) respect for the opinions of others, 3) a willingness to adopt a societal perspective on the issue in question (rather than a focus on what is best for participants as individuals), and 4) reasoned justification of one's positions. We demonstrate that DD can be reliably used to elicit opinions of the public and show how analysis of the quality of deliberations can offer insight into the ways opinions about ethical dilemmas are formed and changed.

Suggested Citation

  • De Vries, Raymond & Stanczyk, Aimee & Wall, Ian F. & Uhlmann, Rebecca & Damschroder, Laura J. & Kim, Scott Y., 2010. "Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research," Social Science & Medicine, Elsevier, vol. 70(12), pages 1896-1903, June.
    • Handle: RePEc:eee:socmed:v:70:y:2010:i:12:p:1896-1903
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    References listed on IDEAS

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    1. Damschroder, Laura J. & Pritts, Joy L. & Neblo, Michael A. & Kalarickal, Rosemarie J. & Creswell, John W. & Hayward, Rodney A., 2007. "Patients, privacy and trust: Patients' willingness to allow researchers to access their medical records," Social Science & Medicine, Elsevier, vol. 64(1), pages 223-235, January.
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    2. Terri Mannarini & Angela Fedi, 2018. "Using Quali-Quantitative Indicators for Assessing the Quality of Citizen Participation: A Study on Three Citizen Juries," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 139(2), pages 473-490, September.
    3. Kieran C. O’Doherty & Michael K. MacKenzie & Dan Badulescu & Michael M. Burgess, 2013. "Explosives, Genomics, and the Environment," SAGE Open, , vol. 3(1), pages 21582440134, March.
    4. Bombard, Yvonne & Abelson, Julia & Simeonov, Dorina & Gauvin, Francois-Pierre, 2011. "Eliciting ethical and social values in health technology assessment: A participatory approach," Social Science & Medicine, Elsevier, vol. 73(1), pages 135-144, July.
    5. Maureen Njue & Sassy Molyneux & Francis Kombe & Salim Mwalukore & Dorcas Kamuya & Vicki Marsh, 2015. "Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast," PLOS ONE, Public Library of Science, vol. 10(5), pages 1-17, May.
    6. Maureen Njue & Francis Kombe & Salim Mwalukore & Sassy Molyneux & Vicki Marsh, 2014. "What Are Fair Study Benefits in International Health Research? Consulting Community Members in Kenya," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-21, December.

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