Changing intersex medicine: How to develop a model of care which is ethically consistent and non-ethnocentric

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Cynthia Kraus (Université de Lausanne, professeure invitée MSH)

Abstract : My lecture will discuss original material I collected over the last two decades through first-hand experience as a social and human scientific (SHS) researcher involved in two specific contexts: First, in Lausanne, Switzerland, where we launched an SHS and gender in medicine initiative in 2005 to develop a model of care centered on the child’s fundamental rights to bodily integrity, self determination and genital autonomy through long-term collaborations between medical and SHS experts, intersex activists and the persons concerned, which made it possible for our team working at the University Hospital CHUV and teaching at the Medical School of the University of Lausanne, to overcome—from below—the lack of ethical guidelines in our country until 2012. The second context is a medical cooperation project in West Africa, in which I conducted fieldwork through observant participation, accompanying in 2010 and 2011 (so far) a team of pediatric surgeons from a European university hospital collaborating with a renowned NGO to give them feedback on how they worked in the Global South. Such fieldwork presented the further advantage of making it possible to consider intersex care globally to reflect critically on the Northern paradigm of evidence-based medicine as practiced by these surgeons in a postcolonial and resource-poor setting. Based on these field experiences, both as a researcher and an actor of change, and on the expert literature on the topic, I will argue that a model of care for persons with a VSD which would be consent-centered (rather than patient-centered), scientifically grounded and medically reasonable, developed from below and ethically symmetrical, i.e., globally consistent instead of Northern-centric, is not only desirable and needed: it is possible now. What are the facts, theoretical tools, as well as the ontological and normative commitments in support of such an argument and real-life possibility? will be the matter of my presentation.

Biography : Philosophe des sciences, Cynthia Kraus est Maîtresse d’enseignement et de recherche en études genre et STS à l’Université de Lausanne (UNIL). Elle est « spécialisée » dans les collaborations interdisciplinaires et la construction de ponts entre sciences et cité. Elle collabore depuis plus de 25 ans avec des (neuro-)biologistes, des professionnel.x.les de la santé, ainsi que des personnes, associations et minorités politiques concernées par des questions de sexe, genre et sexualité dans divers contextes Nord-Sud. Elle est l’une des fondatrices de « l’Ecole de Lausanne » qui réunit une vingtaine de spécialistes des sciences biomédicales et des SHS dans le cadre d’une équipe enseignante (école de médecine, UNIL) et hospitalière (CHUV) pour améliorer les pratiques de soin pour les personnes intersexuées en Suisse. Elle travaille également sur les questions trans, la sexologie, les mutilations génitales féminines et les sciences du cerveau dans le cadre de différents projets FNS, partenariats et réseaux internationaux.

Wednesday 10 May 

5-7 pm, Henri Janne Room, S building, 15th floor

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