4.Q. Workshop: Intersex human rights and wellbeing - Part II: From ethics to healthcare approaches and policies

Abstract   Intersex newborns, children and adolescents frequently are subjected to not clinically necessary surgeries and other non-consensual treatments. According to the UN Factsheet Intersex, “Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies”. Since the 1950s, Western medicine developed a clinical model of early surgeries and other treatments performed on intersex newborns, children and adolescents. In October 2005, an expert meeting elaborated on the Consensus of Chicago, establishing clinical recommendations for intersex healthcare and introducing a new nomenclature: Disorders of Sex Development, a document criticised from activist and academic perspectives. Human rights bodies, intersex activists and allies demand the cessation of not clinically necessary genital surgeries and other treatments performed on intersex children, recommending the postponement of these interventions until the intersex person can give informed consent. Furthermore, they highlight the relevance of providing access to clinical information and medical records, continued healthcare and psychosocial support, if needed. In the clinical field, different approaches for intersex healthcare are currently being discussed, including the elaboration of clinical recommendations. The discussion in the field of intersex studies includes the review of human rights and bioethical principles, clinical and research practices, as well as lived experiences, social circumstances and healthcare needs of intersex people. This workshop is the second part of the workshop series “Intersex human rights and wellbeing”. Part I “From frameworks to ethics and lived experiences” presented theoretical frameworks, ethical aspects in intersex studies and lived experiences of intersex people. Part II “From ethics to healthcare approaches and policies” aims at opening up a shared reflection on clinical practices, health policies and legal frameworks related to intersex health and healthcare needs. The presentations include a review of the right of intersex children to autonomy and informed consent in the Belgian clinical practice and legislation (Presenter: Dr. Pieter Cannoot, Belgium), the presentation of a qualitative research project on the perspectives of intersex people, parents, medical doctors and psychologists regarding intersex healthcare (Presenter: Dr. Ute Lampalzer, Germany), a reflection on the experience of a multidisciplinary team specialised in intersex healthcare in Switzerland (Presenter: Cynthia Kraus, Switzerland), the review of cross-cultural differences in psychosocial intersex healthcare in Germany and Israel (Presenter: Dr. Meoded Danon, Germany), as well as the proposal of an agency-based model of health in intersex healthcare (Presenter: Daniela Crocetti, Italy). Key messages The questioning of not clinically necessary surgeries and other non-consensual treatments performed on intersex children motivates a discussion on new clinical approaches in intersex healthcare. Activists, practitioners and researchers call for clinical recommendations and policies that focus on human rights, informed consent, decisional autonomy, agency and multidisciplinary collaboration.