Research is often conducted without the knowledge or consent of those whose tissues are banked and poses possible harms to social groups if information about a few members is unscientifically applied to all.
There is evidence that children who are unaware of their life-threatening diagnoses do not experience any less distress and anxiety than those who are told, and in some cases they may actually experience more.
Treatment decisions in high-risk situations require a dynamic relationship between doctor and patient in which patient preferences and clinician recommendations contribute equally in shaping a final treatment decision.