Dept. of Urology, Kliniken Essen-Mitte, Germany.
Dept. of Pediatric Surgery, University of Jena, Germany.
J Pediatr Urol. 2019 Apr;15(2):114-123. doi: 10.1016/j.jpurol.2018.10.008. Epub 2018 Nov 17.
The term variations of sex development subsumes a large number of congenital conditions including chromosomal mosaics and variations of chromosomal, gonadal, and phenotypic sex. A situation of this nature may cause severe distress to both, parents and affected persons. One of the reasons for this is the binary form of gender classification in the society. In the past, because of a fear of possible stigmatization and an inability to cope with complex situations, it has been medical policy and practice for newborns to undergo early, mostly 'feminizing' elective surgery with the aim of achieving an outer genital appearance that is unambiguously male or female. Protests by advocacy groups for the most part as well as the results of outcome studies have shown that the development of affected persons may be very different to what has been expected and often does not result in the intended clear female or male gender identity as had been intended. It, therefore, seemed a matter of urgency to implement this new awareness as well as the ethical and personal human rights perspectives in the recommendations for the medical and psychosocial management of diverse sex development (DSD) in the future.
In 2012, an interdisciplinary group of German academics engaged in the field of DSD decided to work on a consensus paper for this topic. It involved the participation of all faculties and non-scientific groups dealing with DSD, in particular advocacy and service-user groups. In a structured consensus, process recommendations were developed based on scientific literature as well as personal experiences of clinicians and affected individuals.
Finally, 37 recommendations were agreed on. The strength of consensus is reflected in the degree of agreement as expressed in percentages.
The introduction of the consensus paper reflects on the emerging paradigm shift and the necessity for a more open view of gender within society. The paper is intended to aid the performance of appropriate diagnostics in DSD-affected newborns and especially to help parents and affected persons cope with the biological and social consequences of DSD. With regard to medical or surgical therapy, it gives information about the most recent treatment trends.
性发育变异这个术语包含了许多先天性疾病，包括染色体嵌合体以及染色体、性腺和表型性别变异。这种情况可能会给父母和受影响的人带来严重的困扰。其中一个原因是社会上性别分类的二元形式。过去，由于担心可能会受到污名化以及无法应对复杂的情况，新生婴儿通常会接受早期的、大多是“女性化”的选择性手术，目的是使外生殖器具有明确的男性或女性外观。倡导团体的抗议以及结果研究表明，受影响者的发展可能与预期的非常不同，而且通常不会像预期的那样导致明确的女性或男性性别认同。因此，似乎迫切需要将这种新的意识以及伦理和个人人权观点纳入未来对多样性性别发育（DSD）的医学和心理社会管理建议中。
2012 年，德国从事 DSD 领域的跨学科小组决定为这个主题撰写一份共识文件。它涉及所有学院和处理 DSD 的非科学团体的参与，特别是倡导团体和服务用户团体。在结构化的共识过程中，根据科学文献以及临床医生和受影响者的个人经验制定了建议。
最终，达成了 37 项建议。共识的强度反映在表示百分比的同意程度上。
共识文件的引入反映了正在出现的范式转变以及社会对性别有更开放看法的必要性。该文件旨在帮助对受 DSD 影响的新生儿进行适当的诊断，并特别帮助父母和受影响者应对 DSD 的生物学和社会后果。在医疗或手术治疗方面，它提供了关于最新治疗趋势的信息。
