InterACT: What We Wish Our Doctors Knew
- “Be honest. I have a right to know about my own body. Secrets make me feel like I should be ashamed.”
- “I’ll end up doing my own research online, and would so much rather hear it from you.”
- “I wish that I had known about everything at age thirteen, when my parents knew.”
- “Please don’t lie to my parents, or advise them not to tell me about my own body.”
- “ I’m not as fragile as you may think I am. I can handle the truth!”
“What do intersex people need from doctors?”
“simple concerns with transparency, accountability and respect. Current medical practices give rise to serious concerns and they need to change to bring them into line with human rights norms”
Sex characteristics are determined by a combination of chromosomes, hormones and anatomy:
- Chromosomes: A binary model assumes two sex-specific chromosomal patterns: 46XX for females and 46XY for males. People with intersex variations may have atypical chromosomal patterns and combinations including a fewer or greater number of chromosomes (such as 47XXY, 47XYY, 45XO, 47XXX, 48XXXX and 49XXXXX) or chromosomal mosaics – cellular combinations of two different chromosomal patterns (such as 46XY/45XO or 46XY/47XXY). Some intersex people may have been assigned to one sex but have the chromosomal pattern of the opposite sex (male presentation and 46XX chromosomes or female presentation and 46XY chromosomes), while others may combine characteristics of both sexes. These natural variations mean that sex chromosomes alone are an unreliable determinant of sex and gender.
- Hormones: A binary model assumes hormone levels and ratios in which females have greater levels and sensitivities to oestrogen than males, and males have greater levels and sensitivities to testosterone than females. And yet, some people with intersex variations produce hormones in greater or lesser amounts than is common to the sex they have been assigned or exhibit more or less sensitivity to hormones than is common for their assigned sex (such as androgen insensitivity syndrome). Some people with intersex variations may have hormone levels and ratios that lead to a delay or absence of puberty or to developmental impacts that are atypical for their assigned sex.
- Anatomy: A binary model assumes development of clearly differentiated primary sex characteristics (ovaries, a clitoris and vagina for XX females, and testes and a penis for XY males), as well as secondary sex characteristics such as height, vocal cord length and/or tenor, facial and bodily hair distributions and thickness, breast development, jawline prominence, muscle mass and other features. People with intersex variations may experience atypical primary sex characteristics relating to differences in the development, size, appearance and/or absence of internal and external genitalia. The development of secondary sex characteristics may also differ as a result of an intersex variation.
Shaping parents, shaping penises: How medical teams frame parents' decisions in response to hypospadias
Psychological research provides insights into how parents approach medical decisions on behalf of children. The medical decision of concern here is the surgical alteration of a hypospadic penis, whose urethral opening does not appear at the tip. Hypospadias surgery is routinely carried out in infancy, despite criticism by international organizations concerned about children's rights. The focus of this study is on the framing of hypospadias surgery.
Reducing obstacles and promoting access to health services for intersex people: recommendations to health professionals
Reducing Health inequalities experienced by LGBTI people: What is your role as a health professional?
The Trainers manual from the project Health4Lgbti includes intersex specific questions and topics
‘Intersexion’ debate at Melbourne medical student conference, 2020
2020 On 23 June, the annual Melbourne Medical Student Conference held a session on the medical treatment of people with intersex variations. Participants were Professors John Hutson, Sonia Grover and Clare Delany of the University of Melbourne and Royal Children’s Hospital Melbourne, and Morgan Carpenter from IHRA. This video includes a debate, and also some discussion immediately prior. The entire video has been recorded and shared with conference participants as it is here.
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