Democratic deliberation and bioethics

Do you trust opinion surveys about bioethics topics? How do we know a survey is valid?  Validity has two aspects:  Does it measure what it purports to measure (internal validity)? Does the survey sample faithfully represent the group of interest (external validity)?  External validity can be described in numbers and so it is easier to evaluate.  

Internal validity is harder to measure.  How do we know the respondents truly understood the issues and the questions? Do their answers reflect 'considered' judgments, the kind of judgments that we hope would inform our policies?

My obsession with these questions about informing bioethics policy with considered views of the relevant stakeholders has led to a series of studies using a method borrowed from political science, called democratic deliberation.  I call it our 'wedding banquet' research because we typically use a large banquet hall with round tables of 6-8 people each with trained facilitators. We usually take an entire day with experts representing various sides of an issue with previously vetted educational materials, small groups deliberations, and pre- and post-deliberation surveys.  Also, we conduct these as randomized experiments (comparing attendees of our deliberation days with different control groups).  



Kim SYH, Wall IF, Stanczyk A, De Vries R.  Assessing the Public’s Views in ResearchEthics Controversies:  DeliberativeDemocracy and Bioethics as Natural Allies.  Journal of Empirical Research on Human Research Ethics 2009; 4(4): 3-16.

Kim SYH, Uhlmann RA, Appelbaum PS, Knopman DS, Kim HM, Damschroder L, Beattie E, Struble L, De Vries R.  DeliberativeAssessment of Surrogate Consent for Dementia Research: Views of Caregivers. Alzheimer’s and Dementias 2010; 6(4): 342-350. 

De Vries R, Stanczyk A, Uhlmann RA, Damschroder L, Kim SYH.  Assessing the quality of democratic deliberation: Acase study of public deliberation on the ethics of surrogate consent forresearch.  Social Science and Medicine 2010; 70 (12):1896-1903.

Kim SYH, Kim HM, Knopman DS, De Vries R, Damschroder L, Appelbaum PS.  Effect ofPublic Deliberation on Attitudes Toward Surrogate Consent for Dementia Research. Neurology 2011;77(24):2097-2104.

De Vries R, Stanczyk A, Ryan K, Kim SYH.  A Framework for Assessingthe Quality of Democratic Deliberation: Enhancing Deliberation as a Tool for Bioethics. Journal of Empirical Research on Human Research Ethics 2011; 6(3): 3-17.

Goold SD, Neblo M, Kim SY, DeVries R, Rowe G, Muhlberger P.  What is good quality public deliberation?  Hastings Center Report 2012;42(2):24-6.

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