Parental Responsibility for the Health of Children with Chronic Disease: Moral Evaluation in Paediatrics

Abstract

Abstract Chronic disorders in children, particularly in newborns, challenge parents in many ways. For decades newborn screening has been applied in several European countries. It offers the chance to detect inborn chronic disorders, mainly metabolic ones, at an early stage. Medical knowledge about the (chronic) disorder, stringent therapeutic care and medical treatment are interrelated with parental responsibility. First of all, mothers and fathers act as accountable in defining when and how genetic knowledge about the disorder should be passed on in the family. Second, an empirical study on cystic fibrosis has demonstrated that acting as responsible medical caretaker is central to the parents’ identity construction. Additionally, in the case of inherited chronic disorders, parents evaluate responsible decision making in future reproductive choices and take into consideration their offspring's future decision making at reproductive age. Key Concepts: Responsibility of information management is one key element in parental coping with early newborn‐screening diagnosis. For parents with children suffering from inherited chronic disorders, it is important to prove that they act as responsible medical carer(s) not only to themselves but also to others. Detection of inheritable chronic disorders raises questions of parental responsibility in deciding on future reproductive choices. Reproductive decisions are also influenced whether there already have been children in the family before a CF child has been diagnosed. Parents of children with inherited chronic disorders are very clear about the essential medical knowledge that has been helpful for them. Parents accountable decision making is influenced by the relationship with one's own child, a partner and other family members.