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From different sides, there is a call for better psychosocial care and counselling in the field of diverse sex development (dsd). However, studies on the specific demands, deficits and needed improvements regarding those services are rare. This exploratory online study aimed at investigating counselling experiences and the ideas that different groups of participants have concerning the localisation of counselling structures and improving care. Quantitative and qualitative data (N = 630) were analysed within a mixed methods framework. The participants included experts of experience resp. patients with different intersex/dsd conditions (n = 40), parents of children with dsd (n = 27), professional psychosocial counsellors (n = 321) and experts in the field including medical practitioners, psychologists, natural and social scientists as well as others involved, e.g., students or relatives (n = 56). The results show a gap between receiving psychosocial and medical care in the group of adult lived-experience experts, who had received less psychosocial care than medical interventions. The findings also reveal important tasks of psychosocial care. A focus was set on parental experiences. Helpful aspects reported were talking with other parents of children with intersex/dsd, aspects missed were assistance in supporting the individual development of their children. The majority of all participants (58%) held the view that, apart from multidisciplinary competence centres, there also have to be easily accessible counselling services which offer support in everyday life. The participants named increasing quality and quantity as necessary improvements in counselling structures for children and adults with intersex/dsd and their families. Implications are drawn for the specific tasks and target groups of psychosocial care and needed research in intersex healthcare over life span.

In May 2021, the German parliament passed a long-debated law to protect children with variations of sex development/sex characteristics from medically unnecessary surgeries until they are old enough to decide for themselves. This law joins similar laws passed in other countries in recent years and recognizes the rights of people with variations of sex development to self-determination and bodily autonomy. In this article, we discuss the notion of bodily autonomy and examine details of the German legislation in the context of psychosocial care. We focus on the following questions: (1) How may the law help to preserve the genital integrity and future bodily autonomy of newborns with variations of sex development (VSD)? (2) What are the opportunities and challenges of this law? (3) What strategies are needed to implement the law in ways that include medical professionals’ knowledge and skills, parental cooperation, and protection for the genital integrity as well as the future genital autonomy of newborns with VSD? We make two main arguments. On the one hand, this law has created a space for a new discourse and discussion on VSD in German society and enables the “wait and see” approach. This approach challenges the traditional “psychosocial emergency” policy aimed at quickly “repairing” atypical genitalia. On the other hand, the law is characterized by significant challenges. For example, it does not address the meaning of bodily autonomy in the context of newborns and their families with VSD, and it overlooks the important distinction between genital appearance, genital function, and gender identity. We offer various educational strategies that can be implemented with different target groups in Germany to meet these challenges and ensure the adequate implementation of this law.

The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management of these conditions by involved medical professionals. In addition, we hope to give impetus to multicentre studies that will shed light on outcomes and comorbidities of DSD conditions across the lifespan.