Parent’s Guide to Consent & Medical Decision-Making

The contention with medical intervention is that parents can be rushed or pressured into decisions that may be undesirable to an intersex person later in life. Even when done with the best intentions, medical intervention undertaken on behalf of a child often carries whole-of-life consequences that may be undesirable to them in the future when they are old enough to articulate their own feelings, opinions and preferences. Many of the ways that medical interventions have been justified have needlessly pathologised natural bodily diversity. In other situations, the risks can be overstated, or the potential consequences not fully considered.

Doctors often place a lot of focus on “normal” function, particularly as a barrier to psychosocial development. This includes the idea that a boy needs to be able to stand to pee, or that a girl’s puberty should happen at the same time as her friends, or else they may experience bullying or discrimination. Sometimes doctors try to justify earlier medical intervention to avoid potential traumatic experiences in hospital when a child is older. This claim cannot be substantiated, and is not supported by any reliable evidence. Clinical bodies responsible for mental health, and human rights institutions, have expressed great concern about all these ideas. There is no credible evidence that mental health and wellbeing can be addressed through early surgeries. Families are best supported with inclusive education and open communication to address shame and stigma.

Some intersex variations present with anatomical and genetic variations that may increase the risk of certain cancers in reproductive tissues, most commonly in the gonads (ovaries, testes, ovotestes or streak gonads). Streak gonads are made up of fibrous tissue that develops instead of typical ovarian or testicular tissue. These gonads cannot produce hormones or gametes (eggs or sperm) and are typically recommended for gonadectomy. Gonadectomy (the surgical removal of gonads) is a major medical intervention and should be carefully and thoroughly considered before a decision is made, due to the whole-of-life impacts post-operatively.

In particular, gonadectomy is in most cases sterilising, and associated with a loss of fertility and fertility-based options/decision-making. It also necessitates a life-long reliance on hormone replacement therapy or hormonal supplementation to maintain the individual’s health and avoid the onset of conditions such as osteopenia and osteoporosis that can weaken their bones. The most common justification for a gonadectomy is the risk of reproductive cancers.

Cancer risks are specific to the individual, their variation and a myriad of other factors, so it is important to consider the situation and details on a case by case basis. While this is a legitimate concern for parents and ‘cancer’ instinctively instills fear, it is important to look at individual factors as cancer risks for specific intersex variations can be overstated and sometimes don’t hold up to scrutiny when looking at modern medical research. For example, ovotestes (gonads that have both ovarian and testicular tissue) have been shown to pose a very low to negligible risk for cancers, however previous practice dictated routine gonadectomy in most cases.

Decisions are often made on a mixture of factors that also include gendered stereotypes. In most circumstances if there is a risk of cancer, this can be monitored over time until the individual is able to make a decision for themselves. If a risk of cancer has been suggested to you, ask for recent evidence of the risk. In some cases, such as androgen insensitivity, clinical guidelines now exist for gonad preservation and monitoring.

If genital surgery is suggested this is an important time to slow down, gather information, and consider the implications and necessity of the intervention. Genital surgeries are only medically necessary where a person is unable to pass urine or other waste from their bodies such as menstrual blood, tissues, and discharge. In these situations genital surgery is considered emergency or urgent medical care.

Unfortunately however anatomical genital differences are often needlessly pathologised, even where there is no functional or structural issue. Some variations present with “ambiguous genitalia.” “Ambiguous genitalia” refers to genital anatomy that cannot be easily classified as male or female. This may include a large clitoris, small penis with hypospadias, absent or small vaginal opening, or fused labia – among other anatomical variations. In these cases, genital surgery may be suggested. These types of surgeries are predominantly cosmetic.

Ultimately such procedures seek to normalise the appearance of the external genitalia, in line with aesthetic norms for male and female bodies. Some examples of these procedures include vaginoplasty and labiaplasty to create or ‘enhance’ a vagina and/or vulva to look more typically female, clitorectomy to remove all or part of a clitoris or phallus that is considered “too large”, or ‘hypospadias repair’ to lengthen and reposition the urethra.

These genital surgeries can leave intersex people with scar tissue, nerve damage, reduced sensation and function, and potentially the need for follow up procedures and surgical correction later in life. A focus on puberty and reproduction makes a lot of assumptions about how a child will want to grow up, with body changes that may only be fixed with expensive or invasive procedures later. For the intersex person who grows up to reject their sex of rearing, these procedures can block gender affirmation pathways. These are procedures that are internationally recognised as human rights violations.

The outcomes of such medical interventions are severe and permanent, and often these justifications do not sufficiently warrant the intervention. While some people may be content with decisions made on their behalf, many others have experienced significant harm and distress from them. In most cases these decisions can be deferred, allowing the intersex individual to participate in decision-making about their own body. In this way the outcomes of medical interventions can best suit those it impacts the most.