Key messages

  • The best practice principles for managing Victorians with intersex conditions aim for the best possible outcomes.
  • Hospitals need to be able to explain their decision making and justify their decisions.
  • The principles include: principles for supporting infants, children, adolescents and parents during decision making, medical management principles, human rights principles, ethical principles, legal principles.
  • The figure shows the principles and suggested sources of advice. Hospitals can apply the principles in any order.

Understanding intersex conditions

Sex is determined by several biological factors, including physical attributes, chromosomes, genitals, gonads and hormones. ‘Intersex conditions’ refers to any set of physical or biological conditions that mean a person cannot be said to be exclusively male or female.

Congenital adrenal hyperplasia and androgen insensitivity syndrome ‒ both of which can cause ambiguous genitalia – are detectable from birth. Other intersex conditions are not detected until later in life ‒ for example, when a child does not progress through puberty in the usual manner. Some intersex conditions are difficult to classify and can be misdiagnosed as non-intersex conditions (for example, some complex hypospadias).

The majority of infants, children and adolescents diagnosed with an intersex condition in Victoria are referred to either the Royal Children’s Hospital (RCH) or Southern Health’s Monash Medical Centre (MMC) Clayton for assessment and healthcare. Both hospitals have the infrastructure and clinicians with the experience, skills and expertise to treat intersex conditions.

Making decisions about infants, children and adolescents with intersex conditions

Practices for diagnosing and managing infants, children and adolescents with intersex conditions (including technology, surgical techniques, patient information and disclosure) have improved significantly. However, decision making about healthcare remains challenging. Parents, families, clinicians, ethicists, lawyers and advocates may have different and sometimes conflicting views on how to achieve the best outcomes.

The best practice decision-making principles for managing Victorians with intersex conditions aim for the best possible outcomes. They also ensure hospitals can explain and justify their decisions. The principles include:

  • principles for supporting infants, children and adolescents, and parents during decision making
  • medical management principles
  • human rights principles
  • ethical principles
  • legal principles.

1. Principles for supporting patients and parents

Victorian hospitals should aim to provide infants, children and adolescents, and parents with:

  • honest and complete disclosure of the diagnosis, risks, options, issues and treatments
  • sufficient time and opportunity to discuss all options for healthcare and to review risks and benefits
  • intensive support, education and counselling during decision making
  • standardised, age-appropriate resources for infants, children and adolescents, and parents about sex and gender diversity
  • information about, and referral to, support groups for both parents/families, and the patient
  • assistance for parents about informing their child in stages about their condition, and with seeking their child’s consent for any medical or surgical intervention
  • ongoing follow-up and referral to psychological support for patients and their parents throughout the patient’s life.

Decision-making principles for the care of infants, children and adolescents with intersex conditions has further information on these principles.

2. Medical management principles

Victorian hospitals should aim to follow these principles in managing the care of infants, children and adolescents with intersex conditions:

  • Avoid gender assignment before expert evaluation in newborns. (‘Gender assignment’ refers to assigning a gender label of male or female to an infant, to raise the child as that gender. Gender assignment does not necessarily require surgery or other medical treatment.)
  • Ensure an experienced multidisciplinary team is responsible for evaluating and managing the patient.
  • Give all individuals a gender assignment.
  • Establish and maintain open communication with infants, children and adolescents, and families, and encourage them to participate in decision making.
  • Respect patient and family concerns, and address them in strict confidence.

Decision-making principles for the care of infants, children and adolescents with intersex conditions has further information on these principles.

3. Human rights principles

The health care of infants, children and adolescents with intersex conditions raises four relevant Victorian Charter Act human rights. Hospitals should test decisions against:

  • the right to protection from medical treatment without consent (s. 10 (c))
  • the right of children to protection (s. 17 (2))
  • the right to privacy (s. 13 (a))
  • the right to equality (s. 8).

Australia is also a signatory to international human rights instruments – including the United Nations Convention on the Rights of the Child, the International Covenant on Civil and Political Rights and the International Covenant on Social, Economic and Cultural Rights – that may be relevant to caring for infants, children and adolescents with intersex conditions. These international human rights are not binding, but a court may consider them when interpreting legislation.

Decision-making principles for the care of infants, children and adolescents with intersex conditions has further information on these principles.

4. Ethical principles

Hospitals should test decisions against the following ethical principles:

  • minimise physical risk to the child
  • minimise psychosocial risk to the child
  • preserve potential for fertility
  • preserve or increase capacity to have satisfying sexual relations
  • leave options open for the future
  • consider parents’ wishes
  • account for the child’s views.

Decision-making principles for the care of infants, children and adolescents with intersex conditions has further information on these principles.

5. Legal principles

A court must authorise some decisions made on behalf of infants, children and adolescents with an intersex condition who cannot give consent. Specifically, a court must authorise the decision if all four threshold questions apply to a particular treatment:

  • the proposed treatment is non-therapeutic, and
  • the proposed treatment is invasive, irreversible and considered ‘major’ treatment, and
  • there is a significant risk of making the wrong decision about the best interests of the child, and
  • the consequences of a wrong decision are particularly grave.

Court authorisation may also be required if the deciding parties disagree about whether a treatment meets these criteria.

Decision-making principles for the care of infants, children and adolescents with intersex conditions has further information on these principles.

Applying the principles

Decision making processes should be:

  • robust – decision-makers should consider all sets of principles in all cases, and apply them thoroughly
  • transparent – decision-makers should document how they apply all principles, so they can explain and justify decisions in the future
  • consistent – decision-makers should consider all principles for all intersex condition cases managed in Victoria.

To make robust, transparent and consistent decisions:

  • clinicians should confer with, or seek advice from, medical, ethical and legal experts. This consultation can include formal advisory mechanisms (such as multidisciplinary medical management groups and clinical ethical committees).
  • the extent of advice and discussion needed for a case will depend on the proposed management plan’s consistency with the principles
  • hospitals should share medical, ethical and legal expertise, so principles are applied consistently across the state
  • hospitals should partner with support groups (such as OII Australia – Intersex Australia and Androgen Insensitivity Syndrome (AIS) Support Group Australia), to achieve international best practice in Victoria. The decision-making principles document acknowledges these support groups.

Summary of decision making principles

This Decision-making principles for the care of infants, children, and adolescents with intersex conditions document shows the principles and suggested sources of advice. Hospitals can apply the principles in any order, not just the order shown here. However, answering the questions posed by the medical management, human rights and ethical principles in the suggested order will help identify whether parents can consent to the management plan or whether court authorisation is needed.