Literature DB >> 19919315

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

Scott Y H Kim1, Ian F Wall, Aimee Stanczyk, Raymond De Vries.   

Abstract

In a liberal democracy, policy decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a longstanding research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed.

Entities:  

Mesh:

Year:  2009        PMID: 19919315      PMCID: PMC2853797          DOI: 10.1525/jer.2009.4.4.3

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  17 in total

1.  Views of potential subjects toward proposed regulations for clinical research with adults unable to consent.

Authors:  Dave Wendler; Rick A Martinez; Diane Fairclough; Trey Sunderland; Ezekiel Emanuel
Journal:  Am J Psychiatry       Date:  2002-04       Impact factor: 18.112

2.  The research on community consultation: an annotated bibliography.

Authors:  Jill M Baren; Michelle H Biros
Journal:  Acad Emerg Med       Date:  2007-04       Impact factor: 3.451

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.  Proxy consent to research: the legal landscape.

Authors:  Elyn R Saks; Laura B Dunn; Jessica Wimer; Michael Gonzales; Scott Kim
Journal:  Yale J Health Policy Law Ethics       Date:  2008

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.  Deliberating about bioethics.

Authors:  A Gutmann; D Thompson
Journal:  Hastings Cent Rep       Date:  1997 May-Jun       Impact factor: 2.683

7.  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

8.  Community consultation in emergency research.

Authors:  Charles Contant; Laurence B McCullough; Lorna Mangus; Claudia Robertson; Alex Valadka; Baruch Brody
Journal:  Crit Care Med       Date:  2006-08       Impact factor: 7.598

Review 9.  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

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

Authors:  Raymond De Vries; Aimee Stanczyk; Ian F Wall; Rebecca Uhlmann; Laura J Damschroder; Scott Y Kim
Journal:  Soc Sci Med       Date:  2010-03-16       Impact factor: 4.634

3.  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

4.  How can one be both a philosophical ethicist and a democrat?

Authors:  Malcolm Oswald
Journal:  Health Care Anal       Date:  2015-03

Review 5.  The ethics of informed consent in Alzheimer disease research.

Authors:  Scott Y H Kim
Journal:  Nat Rev Neurol       Date:  2011-05-24       Impact factor: 42.937

6.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

7.  Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

Authors:  Michele C Gornick; Kerry A Ryan; Scott Y H Kim
Journal:  J Empir Res Hum Res Ethics       Date:  2014-08-11       Impact factor: 1.742

8.  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

9.  Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems.

Authors:  Reshma Jagsi; Kent A Griffith; Aaron Sabolch; Rochelle Jones; Rebecca Spence; Raymond De Vries; David Grande; Angela R Bradbury
Journal:  J Clin Oncol       Date:  2017-05-24       Impact factor: 44.544

10.  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

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.