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On Science, Law, and Medicine: The case of gender-“normalizing” interventions on children who are diagnosed as different in sex development
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.ORCID iD: 0000-0002-7297-830
2016 (English)Doctoral thesis, monograph (Other academic)
Abstract [en]

For the last six decades in Sweden and the US, surgical and other medical interventions have been utilized to reconstruct and “normalize” children  diagnosed as different in their sex development. Under traditional treatment protocols, clinicians chose an “optimal” gender for the children and used different procedures to give them a typical appearance for that gender – aspiring to support them psychologically – and to facilitate penile-vaginal intercourse. Because these treatments have involved reconstructive surgery and other measures, they risk genital dysfunction, loss of sensitivity, loss of fertility, and the risk that the gender assigned will be wrong for the child.

Since the 1990s, expert practitioners have acknowledged that the evidentiary support for the safety and benefits of these procedures for young children is low, relative to later in life. Indeed, they have described the need for evidence has been described as “urgent”, with a “crisis in clinical management”. As of 2016, there appears to be no consensus among expert-practitioners on the timing and nature of these interventions, not only because of the invasive and irreversible nature of the procedures, but also because the gender identity of the children cannot be predicted with certainty. Human rights authorities have also called on nations to stop the procedures. Since 2013, eight such organizations have done so – three from the United Nations, two each from the Council of Europe and European Union, and most recently, the Organization of American States. To date, only three nations – Colombia, Malta, and Chile – have taken formal action in this regard.

This study begins with the proposition that the issues involved raise critical questions about the limits of science, law, and medicine. Specifically, it is a study of medical law in Sweden and the US, to explore how the regulation of medicine might permit or restrict these procedures. It also places medical law in its broader context in relation to critical perspectives on rights related to gender and children. The study attempts to address the question of how law and medicine together determine what happens to the affected children, and what the studied treatments say about medicine, law, and the boundaries of science.

Place, publisher, year, edition, pages
Uppsala: Department of Law, Uppsala University , 2016. , 664 p.
Keyword [en]
differences in sex development, dsd, intersex, science-based medicine, consent, experimentation and research, gender, children, human rights
National Category
Law
Research subject
Medical Law
Identifiers
URN: urn:nbn:se:uu:diva-282593ISBN: 978-91-506-2543-1 OAI: oai:DiVA.org:uu-282593DiVA: diva2:917227
Public defence
2016-05-25, Auditorium Minus, Gustavianum, Akademigatan 3, Uppsala, 10:15 (English)
Opponent
Supervisors
Available from: 2016-05-03 Created: 2016-04-05 Last updated: 2017-01-23

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