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A R T I C L E S
The ethics of research with children that has no prospect of direct benet to the child research participants is reasonably well settled in practice, but lacks a fully satisfactory account to justify current practices. The difficulty lies in two matters: (i) the way the supposed solution is framed as the equivalent of informed consent in competent, mature adults; and (ii) in the often unstated assumption that the decisions parents make in other settings are not comparable in their moral complexities with decisions whether to enrol children in research that poses little risk to them but may benet others signicantly. I will call this research exceptionalism and argue that it has been an impediment to thinking insightfully about minimal risk research with children.
Keywords: vulnerability, children, research participants, risk, informed consent, benets, research exceptionalism
* Corresponding author ([email protected]). President Emeritus, The Hastings Center; Chen Su Lan Centennial Professor (Visiting), Centre for Biomedical Ethics, National University of Singapore.
2 0 1 5 T h e A u t h o r. A s i a n B i o e t h i c s R e v i e w J u n e 2 0 1 5 Vo l u m e 7 , I s s u e 2 1 3 9 1 5 0
Research Exceptionalism? New Ways of Thinking about the Old Problem of Minimal Risk Research with Children
THOMAS H. MURRAY*
Abstract
A s i a n B i o e t h i c s R e v i e w J u n e 2 0 1 5 Vo l u m e 7 , I s s u e 2
Imagine a case of a refugee camp in a strife-torn region consisting of many children who are showing up with or rapidly catching infectious diseases. Aid workers want to know more about what ails these children as well as the risks of transmission they pose to other children. Public health scientists propose a study, mostly observationalmedical records, histories of each childs travails, environmental conditions in the refugee camp. Researchers also plan to gather blood and faecal samples to better document disease exposure and routes of transmission, along with a...