Literature DB >> 20378225

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

Raymond De Vries1, Aimee Stanczyk2, Ian F Wall2, Rebecca Uhlmann2, Laura J Damschroder3, Scott Y Kim2.   

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. Copyright 2010 Elsevier Ltd. All rights reserved.

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Year:  2010        PMID: 20378225      PMCID: PMC2866810          DOI: 10.1016/j.socscimed.2010.02.031

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  17 in total

1.  Subacute meningoencephalitis in a subset of patients with AD after Abeta42 immunization.

Authors:  J-M Orgogozo; S Gilman; J-F Dartigues; B Laurent; M Puel; L C Kirby; P Jouanny; B Dubois; L Eisner; S Flitman; B F Michel; M Boada; A Frank; C Hock
Journal:  Neurology       Date:  2003-07-08       Impact factor: 9.910

2.  Eligibility of Alzheimer's disease clinic patients for clinical trials.

Authors:  L S Schneider; J T Olin; S A Lyness; H C Chui
Journal:  J Am Geriatr Soc       Date:  1997-08       Impact factor: 5.562

3.  Informed consent in biobank research: a deliberative approach to the debate.

Authors:  David M Secko; Nina Preto; Simon Niemeyer; Michael M Burgess
Journal:  Soc Sci Med       Date:  2008-12-16       Impact factor: 4.634

4.  Fostering deliberations about health innovation: what do we want to know from publics?

Authors:  Pascale Lehoux; Genevieve Daudelin; Olivier Demers-Payette; Antoine Boivin
Journal:  Soc Sci Med       Date:  2009-04-10       Impact factor: 4.634

5.  Deliberative assessment of surrogate consent in dementia research.

Authors:  Scott Y H Kim; Rebecca A Uhlmann; Paul S Appelbaum; David S Knopman; H Myra Kim; Laura Damschroder; Elizabeth Beattie; Laura Struble; Raymond De Vries
Journal:  Alzheimers Dement       Date:  2010-02-26       Impact factor: 21.566

6.  What do people at risk for Alzheimer disease think about surrogate consent for research?

Authors:  Scott Y H Kim; Hyungjin Myra Kim; Colleen McCallum; Pierre N Tariot
Journal:  Neurology       Date:  2005-11-08       Impact factor: 9.910

7.  A phase 1 clinical trial of nerve growth factor gene therapy for Alzheimer disease.

Authors:  Mark H Tuszynski; Leon Thal; Mary Pay; David P Salmon; Hoi Sang U; Roy Bakay; Piyush Patel; Armin Blesch; H Lee Vahlsing; Gilbert Ho; Gang Tong; Steven G Potkin; James Fallon; Lawrence Hansen; Elliott J Mufson; Jeffrey H Kordower; Christine Gall; James Conner
Journal:  Nat Med       Date:  2005-04-24       Impact factor: 53.440

Review 8.  Proxy and surrogate consent in geriatric neuropsychiatric research: update and recommendations.

Authors:  Scott Y H Kim; Paul S Appelbaum; Dilip V Jeste; Jason T Olin
Journal:  Am J Psychiatry       Date:  2004-05       Impact factor: 18.112

9.  Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies.

Authors:  Scott Y H Kim; Ian F Wall; Aimee Stanczyk; Raymond De Vries
Journal:  J Empir Res Hum Res Ethics       Date:  2009-12       Impact factor: 1.742

10.  Using deliberative techniques to engage the community in policy development.

Authors:  Judy Gregory; Janette Hartz-Karp; Rebecca Watson
Journal:  Aust New Zealand Health Policy       Date:  2008-07-16
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  21 in total

1.  A framework for assessing the quality of democratic deliberation: enhancing deliberation as a tool for bioethics.

Authors:  Raymond De Vries; Aimee E Stanczyk; Kerry A Ryan; Scott Y H Kim
Journal:  J Empir Res Hum Res Ethics       Date:  2011-09       Impact factor: 1.742

2.  Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.

Authors:  Rochelle D Jones; Chris Krenz; Michele Gornick; Kent A Griffith; Rebecca Spence; Angela R Bradbury; Raymond De Vries; Sarah T Hawley; Rodney A Hayward; Robin Zon; Sage Bolte; Navid Sadeghi; Richard L Schilsky; Reshma Jagsi
Journal:  JCO Oncol Pract       Date:  2020-04-30

3.  Effect of deliberation on the public's attitudes toward consent policies for biobank research.

Authors:  Tom Tomlinson; Raymond G De Vries; H Myra Kim; Linda Gordon; Kerry A Ryan; Chris D Krenz; Scott Jewell; Scott Y H Kim
Journal:  Eur J Hum Genet       Date:  2018-01-18       Impact factor: 4.246

4.  Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.

Authors:  Reshma Jagsi; Kent A Griffith; Rochelle D Jones; Chris Krenz; Michele Gornick; Rebecca Spence; Raymond De Vries; Sarah T Hawley; Robin Zon; Sage Bolte; Navid Sadeghi; Richard L Schilsky; Angela R Bradbury
Journal:  J Clin Oncol       Date:  2019-10-02       Impact factor: 44.544

5.  Using Democratic Deliberation to Engage Veterans in Complex Policy Making for the Veterans Health Administration.

Authors:  Tanner J Caverly; Claire H Robinson; Sarah L Krein; Jane Forman; Martha Quinn; Sarah E Skurla; Laura Damschroder
Journal:  Fed Pract       Date:  2020-01

6.  Deliberative Engagement Methods for Patient-Centered Outcomes Research.

Authors:  Stephanie R Morain; Danielle M Whicher; Nancy E Kass; Ruth R Faden
Journal:  Patient       Date:  2017-10       Impact factor: 3.883

7.  Effect of public deliberation on attitudes toward surrogate consent for dementia research.

Authors:  S Y H Kim; H M Kim; D S Knopman; R De Vries; L Damschroder; P S Appelbaum
Journal:  Neurology       Date:  2011-10-05       Impact factor: 9.910

8.  MindKind: A mixed-methods protocol for the feasibility of global digital mental health studies in young people.

Authors: 
Journal:  Wellcome Open Res       Date:  2022-05-12

9.  Public's approach to surrogate consent for dementia research: cautious pragmatism.

Authors:  Raymond De Vries; Kerry A Ryan; Aimee Stanczyk; Paul S Appelbaum; Laura Damschroder; David S Knopman; Scott Y H Kim
Journal:  Am J Geriatr Psychiatry       Date:  2013-01-12       Impact factor: 4.105

10.  Governance of a Learning Health Care System for Oncology: Patient Recommendations.

Authors:  Rochelle D Jones; Chris Krenz; Kent A Griffith; Rebecca Spence; Angela R Bradbury; Raymond De Vries; Sarah T Hawley; Robin Zon; Sage Bolte; Navid Sadeghi; Richard L Schilsky; Reshma Jagsi
Journal:  JCO Oncol Pract       Date:  2020-10-23
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