Jessie Kimbrough-Sugick, MD, MPH, Jessica Holzer, MA, and Eric B. Bass, MD, MPH
Researchers who approach community partners with an agenda already in hand are missing the point of the community-based participatory research enterprise: developing priorities for study together.
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 help surrogate decision makers to make treatment and end-of-life decisions for those with severe neurological damage by proving a realistic prognosis and maintain strong lines of communication.