Most of us consider sex as a black or white issue. You are either male or female. But the truth is not as simple as that. Sexual identity lies on a spectrum. The arbitrary terms of male or female are a human definition rather than a natural one.
Many cultures recognize the presence of more than two genders including the Bakla of the Phillipines, the Kathoey of Thailand, the Maori Whakawahine and Samoan fa’afafine. In this post we consider some of the ethical and legal issues surrounding intersex. It is important to recognize that the topics discussed are contentious and there is no right or wrong answer, even within the adult intersex community. The aim of this post is to highlight some of the issues and spark discussion.
The ethical principles
Let’s consider the basic principles of Beauchamp and Childress as related to the initial management of intersex.
This ethical principle suggests that the physician should act in the best interest of the patient though it can often be difficult to decide what this is. As we saw in the last post the ‘best available treatment’ can change with time and with specialist. It is not possible to do a randomized control trial and so what should a doctor do? They need to be aware of the best available evidence. Certainly John Money thought he was doing the best for David Reimer when he suggested that he was raised as a girl and was not aware of the long term consequences of his actions. It is also hard to balance a child’s right to determine their own future compared to that of living with an indeterminate gender. It may be that the early assignment of gender may lead to psychosocial problems in adolescence and adulthood.
‘Primum non nocere‘ is perhaps better known than the need for beneficence. It is difficult though to know what treatment constitutes harm at the time it is given. It is also hard for clinicians to recognize the value of ‘no treatment’. Is an act of omission more or less serious than an act of commission? This principle is strongly linked with the Human Rights discussions regarding intersex. One viewpoint is that genital-normalizing surgery, such as clitoral reduction, is akin to female genital mutilation, a practice that is punishable by a number of federal and state laws in the US. This focuses on just one sensationalized aspect of treatment minimizing the importance of team-based shared decision making with minimal interventions.
Justice concerns the distribution of potentially scarce resources – or doing ‘the most for the most‘.
This final principle revolves about the ability of the patient to provide consent for their own treatment, or in the case of infants, for the parents to provide consent. This sticky situation is encountered by neonatologists and paediatricians on a daily basis. Some of the legal issues (in Australia) are reviewed below. Children raised as female may not require surgical intervention until adolescence allowing them to be involved in the decision making process.
The Human Rights principles
In 2013 the UN Special Rapporteur on Torture issued a statement recognizing that intersex people have been subject to non-consensual medical normalization treatment, calling for an end of forced sterilization, forced hormonal treatment and genital normalizing surgery.
The legal principles
The question of who can consent for the treatment of a child is a tough one. Sharryn Gardner covered the basics of Gillick competency in an earlier post. This principle, whilst highly relevant to paediatricians has little bearing on the treatment of newborns who clearly cannot consent for themselves. The real question is whether the parents can consent for them either. In order to delve deeper it is worth reviewing Marion’s case.
Marion’s case or as it is more formally known Secretary, Department of Health and Community Services (NT) v JWB and SMB (Marion’s Case) (1992) 175 CLR 218 largely dealt with a case of parental consent to life altering treatment. ‘Marion’ was a 14 year old girl with severe deafness, epilepsy and intellectual disability. Her parents sought a court order authorizing a hysterectomy and bilateral oophorectomy. This would lead to enforced sterilization and hormonal deficits. The debate centred around who could provide consent for this to occur – the law courts or the parents. The Attorney-General for the Commonwealth of Australia argued that only a law court could decide where as the lawyers for the parents argued that “the decision to sterilize a child is not significantly different from other major decisions that parents and guardians have to make for children“. They felt they should be allowed to give consent given that it was in the best interests of the child.
The court finally ruled that parents may consent to medical treatment on behalf of their children but the authority did not extend to treatment that was not in the child’s best interests. It upheld the view that parents did not have authority if sterlisation was the main aim of treatment.
Interestingly the statement also contained a paragraph granting parents the ability to provide surrogate consent for non-therapeutic circumcision.
Marion’s case hinges around a number of key questions:-
- Is the patient able to give informed consent to the treatment?
- Is the proposed treatment non-therapeutic?
- Is the proposed treatment invasive, irreversible and considered ‘major’ treatments?
- Is there a significant risk of making the wrong decision about the best interests of the child?
- Are the consequences of a wrong decision particularly grave?
Given all of these issues any process should be robust, transparent and consistent.
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Secretary, Department of Health and Community Services (NT) v JWB and SMB (Marion’s Case) (1992) 175 CLR 218.
Gillam L, Hewitt J, Warne G 2010, ‘Ethical principles for the management of infants with disorders of sex development’, Hormone Research in Paediatrics, vol.74, no.4, pp. 412-418
Involuntary or coerced sterilisation of intersex people in Australia 2013 Méndez JE. Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment. full text
Australian Senate; Community Affairs References Committee (October 2013). Involuntary or coerced sterilisation of intersex people in Australia. Canberra: Community Affairs References Committee
Fraser S. Constructing the female body: using female genital mutilation law to address genital-normalizing surgery on intersex children in the United States. International Journal of Human Rights in Healthcare. 2016 Mar 14;9(1):62-72.
O’Connor M. THE TREATMENT OF INTERSEX AND THE PROBLEM OF DELAY: THE AUSTRALIAN SENATE INQUIRY INTO INTERSEX SURGERY AND CONFLICTING HUMAN RIGHTS FOR CHILDREN. Journal of law and medicine. 2016 Mar;23(3):531.
Cools M, Simmonds M, Elford S, Gorter J, Ahmed SF, D’Alberton F, Springer A, Hiort O. Response to the Council of Europe Human Rights Commissioner’s Issue Paper on Human Rights and Intersex People. European urology. 2016 May 19.