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Gender Determination: “Intersexuality is not a disease“
Doctor Michael Wunder; © Deutscher Ethikrat
Most people are clearly female or male. Nature however – human nature as well – also knows other gender types. Intersexuality has always been around in the world and now it is time for society and medical science to finally accept it.
MEDICA.de spoke with Doctor Michael Wunder of the German National Ethics Council (“Deutscher Ethikrat“) about the social and medical difficulties, intersex people face in Germany. Lack of education and acceptance play a big role in this.
MEDICA.de: Doctor Wunder, how is intersexuality defined?
Michael Wunder: Intersexuality is a multifaceted term. In medical science, we talk about differences of sex development (DSD). Intersexuality is a subcategory of DSD and refers to people with ambiguous gender. This ambiguity of gender consists of external and internal genitalia as well as the chromosomal and hormonal state of the person not matching and them consequently not being clearly female or clearly male.
MEDICA.de: How can intersexuality be determined?
Wunder: In some of the cases, DSD is immediately detected after birth if anomalies appear in the external genital area. In other cases, it is not detected until later in development, for example during puberty or the absence of puberty. Girls for instance have no menarche. Only an appropriate physical examination can then reveal whether this is intersexuality.
MEDICA.de: What happens with a newborn child in Germany if DSD is detected?
Wunder: The affected persons that have shared their experiences with us report of very invasive and personality changing early surgical procedures and hormone therapies that forced a specific sex assignment, but that was later on experienced as forced and not livable as such for the person. We hope that such procedures are a thing of the past.
In our opinion, it should first be determined what type of DSD the person has. In addition, parents should be well educated and professionally as well as psychologically and medically advised.
The German National Ethics Council say that sex assignment surgeries must be delayed until consentable age; © panthermedia.net/Monkeybusiness Images
MEDICA.de: What argues against a surgical procedure during infancy?
Wunder: When intersexuality is determined right after birth in a child, in no case does this mean you should immediately be allowed to surgically correct or assign. Sex disambiguation surgeries can wreak a lot of havoc with the affected person. As adults, these people barely have a chance to choose another sex than the one that was chosen for them because their sexual organs were removed in infancy. We at the German National Ethics Council therefore say that sex assignment surgeries must be delayed until consentable age.
MEDICA.de: In which cases should surgery be performed?
Wunder: There are instances where it is advisable to perform surgery on a child. With certain types of gonadal dysgenesis for example where male as well as female gonads exist, there can be an increased risk of tumors. In such a case, the surgery with parental consent is not just legally possible, but also necessary. However, it should occur after careful consideration, through counseling and complete education of the parents.
That said, if there is a low risk of tumor, you could place such gonads within the body at an easy to examine spot and watch during infancy whether the cells show tumor degeneration or not. This way, in this case you would also keep the affected person’s options open to reach his/her own decision at a consenting age.
The introduction of a third gender category “other” is required; © pixelio.de
MEDICA.de: What counseling options are there for the parents of affected children?
Wunder: There are many centers in Germany, which deal with the research of DSD. In addition, there are support groups that counsel affected people and parents. However, the organisations are not sufficiently linked with each other. We need competence centers where all professions work together. We also want so-called peer outreach clinics where affected people counsel other affected persons and family members counsel other relatives.
MEDICA.de: What needs to change in society and medicine in terms of intersexuality?
Wunder: Intersexuality should no longer be a taboo subject in society. People have to deal with this topic and accept intersex people as a part of social diversity. Intersex people should also have the chance to not have to assign themselves to the male or female category. The introduction of a third “other” gender category where affected people can document their gender, regardless whether they are “neither ... nor” or “both … and …” is required. DSD should not be viewed as a disease that needs to be cured in medical science. Intersex people are full members of our society and deserve our respect and acceptance. In doing so, we spare the affected people from leading a secret existence or a life outside of society.
The interview was conducted by Michalina Chrzanowska and translated by Elena O’Meara.