European Experts Just Set New Guidelines for Intersex Care

European medical experts have created new guidelines that rally against the unnecessary genital change surgeries performed on intersex children, a significant step forward in safeguarding the basic human rights of intersex youth.

The consensus statement, based on the latest medical understanding teamed with important supplementary data such as input from intersex people, states that ”For sensitive and/or irreversible procedures, such as genital surgery, we advise that the intervention be postponed until the individual is old enough to be actively involved in the decision whenever possible.”

This is the formalization of what many experts, including the World Health Organization have already promoted, but it is a major departure from previous global health guidelines that treated intersex physical status as a problem to be solved as early on as possible to supposedly “normalize” a child.

An estimated 1.7 percent of the population is intersex, but as our understanding of the broad variance of gender and sex characteristics develops, we learn that the true figure may actually be quite a bit larger. While in some cases surgical intervention may be necessary where a child’s health could be compromised by how they are developing physically, many intersex children could reach healthy adulthood without needing surgical intervention.

Despite this, physicians have historically assigned a gender — which was supposed to spare the child and their family psychological distress — based on a medical best guess of what the child’s gender should be. This uses arbitrary measurements, such as how large or small a child’s sexual organs might be, to determine whether a child should be assigned male or female.

Sometimes parents have consented to such operations only because they thought there was something ”wrong” with their child that needs correcting. Other times, doctors have felt pressured to assign a gender early on, not out of malice or any overt bias against gender variance, but rather believing this was a medical problem that needed solving as early as possible to give the best outcome for the patient.

While for some patients this best guess-approach can end up aligning with the person’s emerging gender, for many intersex youth emerging into adulthood such arbitrary procedures can put them into crisis, as they have been surgically altered and assigned a gender that does not fit them.

What’s more, surgical intervention at such an early age can also lead to a child being sterilized, something that is against international human rights standards.

Creating a Standard of Care for Intersex People

The position statement was created through the European Cooperation in Science and Technology (COST) Action ‘DSDnet’ group, which represents 23 EU states and a number of international partners.

The statement aims to overhaul how we approach health care for people who fall under the Difference of Sex Development (DSD) bracket. This is important because intersex people and those falling under that wider umbrella who do not identify as intersex may have healthcare needs that, until now, haven’t been recognized.

As the treatment guidelines note, intersex individuals appear to be at higher risk of various cardiovascular, metabolic and brain disorders, which may be related to their less-typical biology or, indeed, the treatment they are given early on in life. We also don’t know what the long term effects are of hormone replacement therapies for this group.

We don’t even have a broad evidence base for when it’s best to offer gender affirmation care — whatever that might look like for the individual. The only way to find out, then, is to create frameworks through which intersex and DSD people can be monitored and their data collated. This has been part of the ongoing work of the COST group and something that LGBTQI groups have campaigned on.

What is pleasing about these new position guidelines is how sensitive they are as an instrument for gathering unbiased data that does not pathologize but rather seeks to grow understanding surrounding DSD and then improve health outcomes.

“A holistic and patient-centred model of health care should be sensitive to the potential for secondary distress arising from discomfort with one’s gender,” the researchers note. “Therefore, enquiries about an individual’s gender experience and gender-related contentedness are important. At the same time, the assessment should be framed in a way that does not stigmatize or pathologize any particular gendered presentation.”

This is a far cry from how many patients are treated, even today, when they seek help surrounding their health as an intersex person.

The EU has committed to protecting the rights of intersex people and recently launched a map of intersex organizations across the world as one means of helping provide the intersex community with a way to find support and information. These latest guidelines sit nicely within that remit and should help to inform medical bodies across the EU of best practices when treating intersex patients and to instruct future policymaking.

Related at Care2

Photo credit: Thinkstock.

40 comments

Paulo R
Paulo R1 days ago

ty

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Paulo R
Paulo R1 days ago

ty

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Ingrid A
Past Member 5 months ago

thank you

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Hannah K
Past Member 5 months ago

thanks for sharing

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Mia B
Melisa B5 months ago

Thank you

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Olivia M
Past Member 5 months ago

Thanks

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Dave f
Past Member 5 months ago

Thanks for sharing.

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Chad A
Chad Anderson5 months ago

Thank you.

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Janis K
Janis K5 months ago

Thanks for sharing.

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pam w
pam w5 months ago

YET ANOTHER example of how Europeans are comfortable enough to express empathy and care for one another without trying to blast children with religious dogma.

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