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.
Physicians need to manage expectations and clearly explain the prognosis of ICU patients to their families, particularly when the outcome is a negative one.
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 be aware of the level of emotional distress and suffering that a patient is experiencing as a result of his or her illness and incorporate that into the patient's treatment plan.
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.
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.
A physician defends her position that children should only participate in clinical trials when they have child assent and the parents also have been educated about the purpose of the research when there is no direct benefit to the child.
Physicians should go beyond basic medical diagnosis and treatment to offer support to families about the gamut of social and emotional issues that are involved with caring for a severely disabled child.