Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies.
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.
Kim
Scott Y H
SY
University of Michigan, Ann Arbor, MI 48109, USA. scottkim@med.umich.edu
Wall
Ian F
IF
Stanczyk
Aimee
A
De Vries
Raymond
R
D000368:Aged; D026688:Bioethical Issues; D003625:Data Collection / Q000379:methods; D003704:Dementia; D003709:Democracy; D032984:Ethics, Research; D006291:Health Policy; D006801:Humans; D008875:Middle Aged; D019982:Organizational Case Studies; D018579:Patient Selection / Q000941:ethics; D011639:Public Opinion; D020458:Third-Party Consent / Q000941:ethics; D014481:United States