Intersex people & the Icelandic health care system

Margrét Jóhannesdóttir (she/her)

///What does the term intersex refer to?

Before addressing intersex people’s position within the Icelandic health care system, it’s important to define what the term intersex stands for. As stated on Intersex Ísland’s website, intersex is defined as “a term encompassing a broad range of congenital, physical characteristics or variations which fall between our standard, binary definitions of male or female physical traits. Intersex individuals are born with characteristics which are neither male nor female, a mix of male and female, or not completely male nor female.” In other words, these characteristics or variations can be due to chromosomes, genes, outer genetalia, inner reproductive systems, hormones or outer characteristics such as body hair. It is estimated that 68 individuals are born annually who have atypical biological traits regarding their sex. The total number of intersex people in Iceland is estimated to be about 6000 people.

However, it’s important to note that not all who are born with atypical sex characteristics choose to call themselves intersex. This is often due to the fact that intersex people are not informed of the existence of this term, but instead receive a medical diagnosis. Health care workers often fail to point out organizations which fight for intersex rights, such as Intersex Íslands and Samtökin ‘78, the National Queer Association of Iceland. Additionally, people learn of their intersex characteristics at different times in their lives, ranging from birth to cremation, so these numbers are only an estimation.

Intersex people and their status within the Icelandic health care system

In 2019, Amnesty International published a report involving the resources available by the Icelandic health care system to people with atypical sex characteristics and their families. The report shed light on how these services fundamentally lack a clear, human rights-oriented codes of conduct, an interdisciplinary approach and effective social support. Those who were part of Amnesty’s report described how they felt unheard by doctors, and their wishes regarding what they wanted for themselves for their children were often ignored, while the doctors instead wished to intervene and “fix” the bodies of intersex individuals with surgery or hormonal treatments. This maintains the view that intersex people are a medical problem which needs fixing. It also became apparent that people had difficulty approaching health care services where their human rights were upheld - which, in some cases, caused long-temr damage. It’s clear that the Icelandic health care system lacks interdisciplinary treatment groups, specialized in the matters of intersex individuals.

In recent years, there’s been a significant shift in conversation and views regarding intersex people. Since the aforementioned report’s publishing, bills on gender identity have been made into law, which involve (among other things) the rights of intersex children and adults. The bill also involved the right to gender neutral registration without the diagnosis of “kynáttunarvandi” (an outdated term for gender dysphoria). Additionally, children under the age of 18 are now able to document their correct name and gender at Registers Iceland with parental agreement. These changes to our laws are certainly a cause for celebration and a step forward regarding queer rights, but what remains is ensuring the protection of intersex children who are often made to undergo unnecessary and invasive surgeries. Through the years, intersex children and adults have commonly been regarded as a problem which needs fixing. Surgery and/or treatments like this can further reinforce these outdated views, and there are examples of invasive procedures leading to unnecessary and preventable health issues. These surgeries have been regarded as necessary in order to adjust children’s bodies so they adhere to typical sex characteristics, rather than having a health-related purpose.

Judging from the facts and research listed above, it can certainly be argued that the Icelandic health care system is incompetent when it comes to providing equal, human rights-based health care service. Graduated health care workers are bound by duties and rules of conduct they must follow to the utmost extent. The very first rule of the National Physicians’ Association of Iceland states: “Respect for human beings should always be at the forefront, i.e. the wellbeing, sanctity and autonomy of patients”. Nursing codes of conduct likewise states: “The essence of nursing is the care and concern for the client, and respect for their life, wellbeing and human sanctity”. The treatments and services provided to intersex people by the Icelandic health care system surely do not meet the requirements of the aforementioned rules of conduct. Documented rules and regulations aside, there is undoubtedly much need for ensuring that not only the health care system, but Iceland in its entirety becomes a safe place, free of discrimination and prejudice.

Image: Regn Sólmundur Evu