ESPE Abstracts (2016) 86 CON1.4

An Ethicist's Viewpoint

Clsssaudia Wiesemann


Göttingen, Germany


Decisions for children not able to consent must aim at promoting the well-being of the child and future adult and minimize physical and psychosocial risks. In atypical sex development, well-being is a complex category comprising physical and psychosocial health (present as well as long-term). The child has a right to a gendered identity, bodily integrity, fertility, quality of life including sexual life, and mental health. However, patient well-being is a normative concept and, depending on how it is interpreted, conflicts of interests may arise. Parents need psychosocial support to cope with the stress caused by their child’s medical condition. The child should be encouraged to participate in decision-making as early as possible, dependent on the child’s level of maturity and age. Children acquire decision-making competency between the ages of 10 and 14 and, if competent, must be addressed as relevant moral actors because of the highly personal nature of the issues at stake. In general, irreversible treatments with no direct health benefit should be postponed in order to leave options open for the future until the individual has capacity to consent.

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