Specific advocate guidelines are needed for the protection of children in state custody who are potential research subjects in trials that would expose them to greater-than-minimal risk but also hold the prospect of direct benefit.
Chris Feudtner, MD, PhD, MPH, David Munson, MD, and Wynne Morrison, MD
The way that we choose how to frame the conversation with parents about halting or continuing such therapy for their children who will not recover has special importance in medicine and in society.
Clinical trials for the blood substitute PolyHeme exposed the possibility for ambiguous interpretation of the FDA’s waiver of informed consent for emergency research.
In “Ethics of International Research: What Does Responsiveness Mean?” Christine Grady explains how developing countries are vulnerable to exploitation by researchers and explores what “responsiveness” to the needs of those populations might entail.
Physicians should demonstrate compassion when the parent of an ill child asks the physician for his or her personal opinion regarding the parents' choice to continue experimental treatment when the prognosis is not good.
Pediatricians should be aware of the cultural issues surrounding body image when they counsel certain patients and their parents about the importance of weight loss and the related health concerns.
Physicians who treat children with Down's syndrome should ensure that their parents fully understand the children's capabilities and long-term prognosis and counsel them on the appropriate actions to take regarding their children's care.