Disorders of Sex Development: What guidance do doctors give to parents to tell their child about their intersex condition

Muhammad Zubayr Ali Maudarbocus1, Professor Lynn  Gillam2, Associate Professor Clare Delany2

1The University Of Melbourne, Parkville, Australia, 2The Royal Children’s Hospital, Parkville, Australia

Disorders of sex development (DSD) are congenital conditions associated with atypical development of chromosomal, gonadal or anatomical sex. Historically, medical and surgical treatment assigned a child to a gender as early as possible and little information was given to children.  As an individual’s sex and gender are increasingly acknowledged as existing on a continuum, treatment has had a more holistic focus on the overall well-being of the child within the context of their cultural and social environment. However, treatment remains controversial and some argue that gender assignment surgery diminishes a child’s future autonomy to decide for themselves. Little is known, from an empirical perspective, about how clinicians communicate information to parents and to children about DSD conditions; whether they mention alternative views about surgery or distinguish between parents’ and children’s’ interests, and whether they leave the parents to decide or are more directive in their advice.

In this paper we report the results of a qualitative study where (n = 10) clinicians from different backgrounds were interviewed using a semi-structured exploratory approach, about the guidance they give to parents about telling their child about their DSD.  Although we found that clinicians consider it important to facilitate how and when parents should talk to their child, there was considerable variation about what type of information to give; when it should be given; and for what purpose. Some clinicians suggested parents should take their cues from questions posed by the child and others believed it important to actively build a child’s positive identity by normalising the condition from an early age. We discuss these different views by analysing how they relate to what is ethically important for the child and family.


Biography:

I am a final year medical student with a background in anatomy. I have worked extensively with the queer community through my work with the Coming Out Support Group. I also have done advocacy work with MDQueer to advocate for the inclusion of queer health in the medical curriculum. I have a strong interest in Human Rights and its intersection with Ethics, especially when applied with the treatment of children born with an intersex variation.

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