ESPE Yearbook of Paediatric Endocrinology

Cult Health Sex. 2021 Apr;23(4):564–578. doi: 10.1080/13691058.2020.1785012.. https://www.ncbi.nlm.nih.gov/pubmed/32876546

This paper, by a human rights researcher, explores how European law systems, by their conceptualisation of sex as a binary construct, may favour medical interventions in children with variations in sex characteristics and reflects on the tension between the legal obligation for parents to represent their minor child and their child’s personal right for autonomy and self-determination.

The merit of the paper is that it helps medical professionals understand why modifications to the legal framework in which they operate are needed. Parental views, inspired by their own background and history, do not necessarily align with the future views of their children, especially not when it comes to identity and personality. The question if parents are optimally placed to make decisions with life-long and far-reaching implications for their child merits attention. Medical professionals, when seeking informed consent for any form of treatment, should be more aware of the pitfalls related to this ethical dilemma and should seek thorough assessment of the fully informed child’s opinions and wishes, prior to any intervention. Law should include procedures that guide caregivers when potential conflicts may occur between parental and minor’s opinions on the proposed interventions, especially when there is no medical emergency. Unfortunately, throughout the text, medical practices and the potential psychological problems related to living with variant sex characteristics are oversimplified or sometimes neglected, and little attention is paid to differences among individual children’s and their families’ needs.

Interdisciplinary interaction and exchange of knowledge that allows mutual understanding is crucial to evolve towards a situation where the physical and mental well-being of every individual child is protected, in accordance with each family’s personal values, and within their sociocultural and spiritual context. A generally applicable law will not suffice. Instead, a law that secures the child’s autonomy and right for self-determination as an overarching fundament, and at the same time allows for variations in medical approach inspired by the child’s individual psychological, medical, intra-familial and societal context, with the best interest of the child as the aim in all circumstances, is how progress can be made.