The intersex child : an ethical approach to holistic care

Abstract

Disorders of Sex Differentiation (DSDs) are a number of conditions which first present as atypical genitalia in relation to the chromosomes or gonads. These conditions are most often a surprise to both doctors and parents, and in some cases, they are considered to be medical emergencies. Being unable to assign a sex to the newborn is not only distressing to the parents, but also creates a dilemma for the doctor who, in most cases, must guide the parents when making decisions which will very often have a long-term effect on the child. Sex may only be assigned after a number of tests have been carried out, but sometimes, even these tests may be inconclusive. The Gender Identity, Gender Expression and Sex Characteristics Act (GIGESC) which became law in Malta in 2015, was enacted in an attempt at recognising and protecting issues which pertain to the sex characteristics of a person. This Act was seen as groundbreaking in the sphere of gender issues, however, it does not address newborns born with DSDs specifically, and thus there are still many aspects of the care of such persons which are subject to the caregiver’s professional and moral compass. Neonates born with a DSD require medical care but also psychological and social care. There are also legal issues that need to be addressed. In this dissertation, I have highlighted the various medical, legal, and psychosocial issues faced by children born with a DSD and I have discussed the ethical principles that caregivers may apply. I have also put forward a number of recommendations so that a specifically appointed interdisciplinary team may provide all the various aspects of care in an ethical framework. This is essential so as to minimize as much as possible the suffering endured by both the children and their parents.