Towards a human rights-based research ethics in intersex studies: Reflections from the INIA project

Abstract

Abstract Background Intersex authors and allies identify human rights violations and ethical challenges in clinical practice and research. The Intersex - New Interdisciplinary Approaches (INIA) project trains 10 early stage researchers who develop research projects aimed at supporting the wellbeing and rights of intersex people. The INIA project includes the establishment of ethical procedures and discussion of ethical aspects. One of the INIA research projects focuses on the development of ethical principles in intersex studies. Objectives To present ethical procedures established in the INIA project, as well as reflections on research ethics. To summarise preliminary findings of the INIA research project “Research ethics in intersex studies”. Results The INIA project established ethical procedures based on international and European standards, an Ethics Advisory Board, as well as training activities on research ethics. The INIA consortium and researchers discussed ongoing ethical aspects, taking into account specific characteristics of research in the field of intersex studies. The INIA research project “Research ethics in intersex studies” reviewed ethical challenges in intersex-related research and ethical recommendations mentioned in the recent literature. Conclusions For guaranteeing the human rights of intersex people, the development of ethical principles for intersex-related research is identified as a relevant aspect. The INIA project aims at contributing to this process, understanding research ethics as an ongoing, reflexive practice.