Endocrine Abstracts

While fertility preservation is recommended practice for paediatric oncology, fertility preservation in children with different types of DSD can mean different things: to preserve functional gonads, to support development with hormonal treatments, or to reshape genitals by surgery to align them to a typical female or male shape, in order to make them suitable for sexual intercourse. Many factors contribute to the ethical complexity of this area of parental decision-making and paediatric practice. My talk intends to map this complexity in order to better understand what is at stake morally. The ethical and legal consensus position in more and more countries is to postpone as many decisions about invasive and irreversible treatments, such as genital surgeries, until the time when the young person can make their own choices. Treatments that are necessary to avert danger to health and cannot be delayed are, however, exempt under what I call the ‘health exemption’. Reproductive health should arguably be part of it. However, it is not entirely clear how broad that concept of reproductive health should be and how central reproductive functions are to the health of the person. For instance, the capacity to conduct peno-vaginal intercourse might not necessarily, under all circumstances, be part of it, given that there are also other ways to be sexually active and fertile. I will argue that a complete inclusion of all assumed fertility problems into the concept of reproductive health will unduly reduce the autonomy of the person later in their life and conflict with the intended meaning of the 2025 recommendation of the Council of Europe. On the other hand, if fertility preservation were not regarded as part of health, all fertility-preserving interventions in smaller children would be avoided and certain groups of DSD patients would, in effect, be sterile. Decisions need to avoid these two extremes: to obliterate autonomy and to block out fertility. A defensible understanding of the child’s well-being under these circumstances needs to consider both aspects and to be developed in a way that respects the young person’s moral subjectivity, which will lead to autonomy later in life, already at the time of decision-making. Will parents be able to explain their decision to the young person later in their life, or is their decision based on principles that they have reason to expect the person reasonably to reject?