Mapping the Transition to “Informed Consent” Models for Medical Interventions on Persons with Intersex Conditions (or other Differences in Sex Development)
Very welcome to this Crip & Queer seminar with Jameson Garland from Uppsala University.
In October 2017, the Parliamentary Assembly for the Council of Europe (CoE) passed a joint resolution and a recommendation regarding protection of the rights of intersex persons. Resolution 2191 called on Member States to enact laws to prohibit non-consensual gender-conforming medical procedures without the informed consent of the children with intersex conditions, as well as to ensure that non-emergency procedures are delayed until the children can participate in care decisions, ‘based on the right to self-determination and on the principle of free and informed consent’. In addition to a number of civil law reforms, the resolution called on Member States to ensure access to patient-centered health care for persons with intersex conditions. In support of the Resolution, Recommendation 2116 directed the CoE’s Committee on Bioethics (DH-BIO) to develop guidelines for informed consent. These developments, in fact, followed the initiative of DH-BIO to map all of the rights of children that may be affected by scientific risk and uncertainty in biomedicine, including clinical, medical practices. Indeed, two reports commissioned by DH-BIO as part of this initiative have warned that current clinical practices involving children with intersex conditions affect a broad spectrum of rights that intersect with and go beyond rights in biomedicine.
This paper maps the challenges likely to be faced by persons with intersex conditions and other differences in sex development, as well as the Member States of the Council of Europe, in any transition to “informed consent” models regarding gender-conforming medical procedures in childhood. Many of these challenges, in fact, have been indirectly identified by those who have invoked systemic legal problems as justification for resistance to law reform. The paper problematizes the model of “informed consent”, with examples from the Nordic region, where several medical and bioethics authorities have criticized current practice but have left many questions unresolved in how to transition to an informed consent model of care. The paper proposes essential criteria for such a model with cautions as to why informed consent alone, as traditionally conceived, will leave children in vulnerable positions in health care and in Europe, and why the breadth of the Council of Europe’s recommendations require full consideration.
Jameson Garland is a researcher and lecturer at Uppsala University (Sweden). He is the co-author of The Rights of Children in Biomedicine, the first report commissioned by DH-BIO to focus on the rights of children with intersex conditions and differences in sex development. He also was a member of the Global DSD Update Consortium’s working group on ethical and legal issues, which published its statement in 2016 conceding the substantial inadequacy of data to support the infant surgery model in this field. He has published on the scientific problems with the infant surgery model in the Journal of Pediatric Urology and in The Legal Status of Intersex Persons (both with Milton Diamond). His doctoral thesis on the subject was recognized by the Royal Swedish Academy of Letters, History, and Antiquities has been granted research funding by the Ragnar Söderberg Foundation in Sweden to focus on science-based standards of pediatric care, with a focus to continue on the questions of gender- conforming interventions on children.
Accessibility: The building is wheelchair accessible. There is an elevator, automatic doors and accessible toilet. The presentation will be around 45 minutes with a 15 minute break. The remaining time will be intended for discussion and questions. Please contact us if there is anything we should know and can do in advance so that you can come and take part.
If further information is needed, please contact Mikael. Karlsson at Mikael [dot] karlsson [at] genus [dot] lu [dot] se
Room M:226, Department of Gender Studies, Allhelgona kyrkogata 14. Lund