An Investigation into the Medical Management of Intersex Infants: Towards Meaningful Law Reform in the UK

Lewis Hamilton recently made headlines at Formula One’s inaugural event in Qatar. The seven-time world champion wore a racing helmet which featured a new version of the Pride Progress Flag; the traditional rainbow design with additional colours to acknowledge the diversity of the LGBT+ community. This version, designed in 2021 by award winning intersex activist and equality campaigner Valentino Vecchietti, incorporates the intersex flag; a purple circle on a yellow backdrop.

Hamilton’s gesture reflects a growing trend towards greater public awareness of intersex issues which has taken place in recent years. Intersex has become a more widely acknowledged part of the LGBT+ acronym, with intersex people officially joining the London pride march for the first time in 2018. Intersex stories and testimonies can also be seen in mainstream media from time to time. At policy level, questions related to intersex were included within the LGBT Survey of 2017 as well as the Gender Recognition Act Consultation in 2018. In 2019, the UK Government issued a Call for Evidence on intersex-specific issues.

However, while awareness of intersex people may be increasing, few are aware of an ongoing struggle facing many intersex individuals; the continued practice of unnecessary, non-consensual medical interventions on the bodies of babies and children with variations in their sex characteristics. While the majority of intersex traits pose no medical risk, doctors routinely recommend surgeries and other treatments in order to create an appearance which can be simplistically categorised within a binary model of sex. Doctors recommend that treatments should be performed at the earliest possible stage for “best results,” despite a lack of evidence that the treatments provide benefit. In fact, recommended treatments can have devastating and often irreversible consequences, including sterility and incontinence, as well as loss of sensation. Intersex people who were subjected to euphemistically termed “normalising treatments” at a young age are often left dealing with chronic pain and deep psychological trauma. Many report feeling violated by invasive procedures which took place without their consent.

Intersex activists and organisations have been campaigning against these practices for decades, arguing that they should be delayed until the patient is old enough to make decisions about their own body. The UN has called the continued practice of “normalising” interventions on the bodies of babies and children a human rights violation and urged governments to provide intersex people with safeguards. However, while a small minority of countries such as Malta have passed legislation with this aim, the UK Government has thus far failed to engage meaningfully with the issue and continues to defer to the authority of the NHS. This means the situation in the UK is not improving. As Vecchietti writes: 

“I hear time and again representatives from different countries describe the same circular, self-perpetuating problem. The medical profession won’t listen to the arguments of intersex activists appealing to human rights. Lawmakers defer to the medical profession. The medical profession sees it as its job to surgically alter intersex bodies.”

This is where my PhD research will strive to make an impact. The project, provisionally titled: “An Investigation into the Medical Management of Intersex Infants: Towards Meaningful Law Reform in the UK” is being funded by Durham Law School. I will conduct an empirical study with the intention to approach this complex and deep-rooted issue from a new angle. There is already evidence that the intersex community experiences profound harm as a result of current medical practice and it is clear that urgent change is needed. However, there is no evidence that the frequency of normalising procedures is decreasing. The research will aim to directly engage with medical practitioners in order to investigate the factors driving non-therapeutic treatments for intersex traits. It will also ask why procedures are recommended at such a young age before the patient is able to consent. These questions are crucial; we need to know whether clinical decision-making in this field really protects the best interests of children. Evidence which suggests it does not, would lend significant weight to the case for urgent state intervention to ensure these procedures are prohibited.

The desired outcome of the research project is to provide up-to-date empirical evidence from a previously under-researched perspective, which could be used to assist the development of regulation in this area on a more fully informed basis. It also aims to facilitate constructive communication and support learning in the medical profession about intersex people and their wellbeing. Bridging the gap in communication between the medical profession and lawmakers is an essential step if we are to progress towards a safe, satisfactory approach to intersex healthcare.

Eleanor Drover, PhD student, Durham Law School