This presentation will present the framework, practice points, and ethical issues arising from our recent work to develop Clinical Guidelines for the care of children and young people with innate variations of sex characteristics (IVSC) in Aotearoa. We will also briefly reflect on the process of developing these guidelines, which involves a long-term collaborative approach between people with IVSC and their whānau, intersex advocates, academics, community leaders, and healthcare professionals.
The Guidelines use a Te Ao Māori framework developed by Professor Kerekere, composed of six core values representing elements of the wharenui (ancestral meeting house). Te Whare Takatāpui involves attention to Whakapapa (genealogy), Wairua (spirituality), Mauri (life spark), Mana (authority/self-determination), Tapu (sacredness), and Tikanga (rules and protocols). This is the first Indigenous framework of its kind for IVSC and supports a commitment to honouring Te Tiriti o Waitangi and a rights-based approach to supporting autonomy and agency within healthcare.
In this presentation, we will present the core practice points from the Guidelines, which highlight the importance of a non-alarmist and de-pathologising approach, bodily autonomy, multidisciplinary and interprofessional teams, continuity of care, health navigators to support families, health registries to enhance the information available to clinicians, families, and patients when making decisions, transition from paediatric to adult care, and support for health providers to reflect on gender norms and bias. We will reflect on the challenge of presenting advice which both adequately protects children’s health and wellbeing and also prevents unnecessary interventions and promotes children’s bodily autonomy.
Final Presenters TBC