Questions for Doctors and Healthcare Professionals
What is the research that proves John Money’s theory wrong?
In 1997, Professor Milton Diamond and Keith Sigmundson published an account of the actual outcome of the “John/Joan” case. Milton Diamond is a leading expert on intersexuality and a long-standing critic of John Money’s theories. Keith Sigmundson is a psychiatrist to whom David Reimer’s family turned after David’s decision not to continue living in female role. The paper by Diamond and Sigmundson showed that the reported outcome of the “John/Joan” case was extremely misleading. Far from supporting John Money’s theories and the standard protocol of treatment based upon them, the actual outcome of the “John/Joan” case told directly against the theories and the protocol.
What is Androgen Insensitivity Syndrome (AIS)?
People with AIS are genetically 46XY and are born with testes. Physical characteristics
(phenotype) can vary from male to female and anywhere in between. People with complete AIS (CAIS) are physically unambiguously female, whereas people with Partial AIS (PAIS) range from males with ambiguous genitals to women with little response to androgens. The condition is caused by an inability for foetuses with a male chromosomal pattern to respond either fully or partially to androgens (male hormones).
What is Congenital Adrenal Hypoplasia (CAH)?
People with CAH are genetically 46XX and have female internal reproductive organs (vagina, uterus and ovaries). However, as a result of the adrenal glands of the developing foetus producing excessive amounts of androgen, the foetus’ genitalia begin to develop in the male direction.
The clitoris of a baby with CAH is enlarged and may resemble a small penis. The cleft
between the labia or lips may be partly closed over, hiding the entrance to the vagina. The urinary passage and vagina may also both open into one entrance as a result.
What is Klinefelter’s Syndrome?
People with Klinefelter Syndrome are born with a 47XXY sex chromosome pattern. People with this condition are usually raised as males and often have breast development, low androgen production and small testes.
What is Turner’s Syndrome?
A condition where an infant is born with a 45XO sex chromosome pattern. Typical
affects include gonadal streaks in lieu of ovaries, short stature, cardiovascular
conditions and hormone deficiencies.
Some physical manifestations of Turners syndrome have what is referred to as a Mosaic sex chromosome pattern where some or all cells in the body possess duplicate sex chromosomes such as XO/XY.
What is Hypospadias?
A condition where the urethral opening is not on the tip of the penis. (Usually along the
penile shaft or in the perineum).
What is the “tape measure” test?
The tape measure test was a method that was developed by John Money in order to determine if an intersex infant was male. The test determined what was a “usable penis” based on the length of the infant’s penis.
Infant’s penises between 0.9 cm to 2.5 cm in length were considered “not usable”. Surgery would then be performed on the intersex infant’s penis in order to make it into a vagina.
Why is the tape measure test a faulty indicator?
The tape measure test is a faulty indicator because the size of the penis does not determine one’s sex. The tape measure test has been proven incorrect and does not respect the idea that the nervous system involved in adult sexuality has been influenced by genetic and endocrine events that will most likely become manifest with or after puberty.
What is the “Best Guess” strategy?
The “best guess” strategy can refer to two strategies (best guess surgical strategy and best guess non-surgical strategy)
“Best Guess” Surgical Strategy
The best guess surgical strategy involves using genetic tests and historical case studies in order to determine what gender (girl or boy) an intersex child will most likely feel most comfortable in. This strategy also typically involves a tape measure test (see what is a tape measure test).
Once the tests are performed doctors choose a gender for the intersex child to be raised in and then surgery is performed on the intersex infant’s external genitalia (outside sex organs) to make it physically look either “male” or “female”.
This strategy is not 100% accurate and many times an intersex child may choose to change their gender at puberty (when they are a teenager). Surgery is usually irreversible and it does not give the intersex person a choice. Many intersex people who have had un-needed surgery performed on their genitals without her/his approval have many emotional and physical scars. It is important not to perform surgery on an intersex infant’s or child’s genitalia.
Surgery does not need to be an option, unless the intersexed person clearly wants it. Unless surgery is needed to save a life or because of a real danger to health, it should always be the choice of the person on whom it is done. Typically most intersexed people in a position to choose whether or not to have genital surgery choose not to have the surgery performed.
“Best Guess” Non-Surgical Strategy
The best guess non-surgical strategy involves using genetic tests and historical data studies in order to determine what gender (girl or boy) an intersex child will most likely feel most comfortable in. The intersex child is then raised in that gender with the understanding that the intersex person may choose a different gender at another point of their life (possibly during teenage years).
The best guess non-surgical strategy should also go along with counseling and education for both the family and intersexed person is needed in order to better understand intersexuality.
Why is the ‘best guess’ surgical strategy not the best option?
Standard practice involves the imposition of genital surgery on intersexed infants and toddlers on the basis of a “best guess” at the outcome of such surgery. The life experiences of many intersexed adults on whom such genital surgery was imposed in infancy and childhood shows that the outcome is often negative. There have also not been systematic follow-up studies of the outcomes of such surgery. Thus, the “best guess” surgical strategy is not the best option.
There is also an ethical dimension to this. An intersexed person has a right to self-determination which makes the imposition of un-necessary and non-consensual genital surgery morally wrong. The Principle of Double Effect, an ethical principle often used to determine courses of action in “hard cases”, tells against the ‘best guess’ surgical strategy.
How can I support parents with their decision-making process?
It is important to provide parents with resources, peer support and counseling in order to be fully supported and educated in the area of intersexuality. Avoiding un-necessary genital surgery should be strongly encouraged. Counseling for the whole family should be facilitated by a psychologist/social worker who is trained in the area of intersexuality.
How can I support medical administrative strategies to make sure people can access their medical records?
What kind of indicators and statistics on intersexuality need to be developed in South Africa’s medical system? – initial stats, follow up stats, more medical research in SA
How can I learn more as a doctor or healthcare professional?
To learn more check-out our publications and links pages.
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What is more fluid, more yielding than water? Yet back it comes again, wearing down the rigid strength which cannot yield to withstand it. So it is that the strong are overcome by the weak, the haughty by the humble.
— Lao Tse
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