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

被引:48
|
作者
De Vries, Raymond [1 ]
Stanczyk, Aimee
Wall, Ian F.
Uhlmann, Rebecca
Damschroder, Laura J. [2 ]
Kim, Scott Y.
机构
[1] Univ Michigan, Sch Med, Bioeth Program, Ann Arbor, MI 48109 USA
[2] Ann Arbor VA Hlth Serv Res & Dev, Ctr Clin Management Res, Ann Arbor, MI USA
关键词
USA; Deliberative democracy; Surrogate-based research; Research ethics; Dementia; ALZHEIMER-DISEASE; CLINICAL-RESEARCH; VIEWS; AD;
D O I
10.1016/j.socscimed.2010.02.031
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
"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. (C) 2010 Elsevier Ltd. All rights reserved.
引用
收藏
页码:1896 / 1903
页数:8
相关论文
共 50 条
  • [1] Effect of public deliberation on attitudes toward surrogate consent for dementia research
    Kim, S. Y. H.
    Kim, H. M.
    Knopman, D. S.
    De Vries, R.
    Damschroder, L.
    Appelbaum, P. S.
    NEUROLOGY, 2011, 77 (24) : 2097 - 2104
  • [2] A FRAMEWORK FOR ASSESSING THE QUALITY OF DEMOCRATIC DELIBERATION: ENHANCING DELIBERATION AS A TOOL FOR BIOETHICS
    De Vries, Raymond
    Stanczyk, Aimee E.
    Ryan, Kerry A.
    Kim, Scott Y. H.
    JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS, 2011, 6 (03) : 3 - 17
  • [3] Assessing the democratic quality of deliberation in international governance: Criteria and research strategies
    Nanz, P
    Steffek, J
    ACTA POLITICA, 2005, 40 (03) : 368 - 383
  • [4] Assessing the Democratic Quality of Deliberation in International Governance: Criteria and Research Strategies
    Patrizia Nanz
    Jens Steffek
    Acta Politica, 2005, 40 : 368 - 383
  • [5] Ethics of deliberation, consent and coercion in psychiatry
    Liegeois, A.
    Eneman, M.
    JOURNAL OF MEDICAL ETHICS, 2008, 34 (02) : 73 - 76
  • [6] Democratic education and the epistemic quality of democratic deliberation
    Leiviska, Anniina
    THEORY AND RESEARCH IN EDUCATION, 2023, 21 (02) : 113 - 134
  • [7] Representation as advocacy - A study of democratic deliberation
    Urbinati, N
    POLITICAL THEORY, 2000, 28 (06) : 758 - 786
  • [8] Effect of deliberation on the public’s attitudes toward consent policies for biobank research
    Tom Tomlinson
    Raymond G. De Vries
    H. Myra Kim
    Linda Gordon
    Kerry A. Ryan
    Chris D. Krenz
    Scott Jewell
    Scott Y. H. Kim
    European Journal of Human Genetics, 2018, 26 : 176 - 185
  • [9] Effect of deliberation on the public's attitudes toward consent policies for biobank research
    Tomlinson, Tom
    De Vries, Raymond G.
    Kim, H. Myra
    Gordon, Linda
    Ryan, Kerry A.
    Krenz, Chris D.
    Jewell, Scott
    Kim, Scott Y. H.
    EUROPEAN JOURNAL OF HUMAN GENETICS, 2018, 26 (02) : 176 - 185
  • [10] Recruiting for representation in public deliberation on the ethics of biobanks
    Longstaff, Holly
    Burgess, Michael M.
    PUBLIC UNDERSTANDING OF SCIENCE, 2010, 19 (02) : 212 - 224