A Principled Ethical Approach to Intersex Paediatric Surgeries Kevin G

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A Principled Ethical Approach to Intersex Paediatric Surgeries Kevin G Behrens BMC Med Ethics (2020) 21:108 https://doi.org/10.1186/s12910-020-00550-x DEBATE Open Access A principled ethical approach to intersex paediatric surgeries Kevin G. Behrens* Abstract Background: Surgery for intersex infants should be delayed until individuals are able to decide for themselves, except where it is a medical necessity. In an ideal world, this single principle would sufce and such surgeries could be totally prohibited. Unfortunately, the world is not perfect, and, in some places, intersex neonates are at risk of being abandoned, mutilated or even killed. As long as intersex persons are at such high risk in some places, any ethical guidelines for intersex surgeries will need to take these extreme risks of harm into account. Main text: I therefore argue for fve basic principles that ought to inform ethics guidelines for surgical interven- tions in intersex children, specifcally in contexts in which such children are at risk of signifcant harm. What I set out to come up with is a set of principles that do not completely prohibit surgery, but only allow it where a strong case can be made for its necessity, in the best interests of the child, and where there is some kind of oversight to prevent misuse. The frst principle is that interventions as drastic as these surgeries should only be performed when there is strong evidence that they are benefcial and not harmful. The second principle is that in surgeries should normally only be performed in cases of true medical necessity. Principle three is that surgeries should normally be delayed until such time as the intersex person is mature enough to assent to treatment or decide against it. Principle four is that the conventional ethical requirements regarding truth telling apply equally to intersex children as to anyone else. The fnal principle is that where physicians or parents think that surgery is in the best interests of the child, the burden of proof lies with them. Conclusion: It is hoped that these principles might help medical teams and parents make better decisions about intersex surgeries on children, and they would make such surgeries very rare indeed, if they happen at all. Keywords: Intersex, Intersex surgery, Intersex paediatric surgery, Intersex ethics Background was killed by family members when it was discovered On 24 January 2018, a South African newspaper, the that it had been born with ambiguous genitalia. Tey Mail and Guardian, posted an article online. It was enti- decided to lie to the mother and tell her that the child was tled ‘Intersex babies killed at birth because they are bad stillborn. Te author points out that this is an example of omens’. In it the author describes an incident in a rural many cases of intersex infanticide that occur because of a South African village in which a traditional healer, assist- belief that ‘intersex babies are bad omens. Tey are seen ing with the delivery of a baby, witnessed how the baby as a sign of witchcraft and a curse on the family and the community as a whole’ [1]. While we do not have reliable statistical data for how *Correspondence: [email protected] often intersex infanticide takes place in South Africa, Steve Biko Centre for Bioethics, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Phillip V. Tobias there is sufcient evidence to know that it does occur. Health Sciences Building, 29 Princess of Wales Terrace, Parktown, In an informal study conducted by Tunchio Teriso in Johannesburg 2193, South Africa a rural area of South Africa, 88 out of the 90 traditional © The Author(s) 2020. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/publi cdoma in/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Behrens BMC Med Ethics (2020) 21:108 Page 2 of 9 midwives and birth attendees interviewed owned up to position. How would I feel if the total prohibition of child having killed babies born with ambiguous genitalia [1, surgeries did have the efect of a signifcant rise in infan- 2]. Furthermore, we know that, in a context in which an ticide or abandonment, or if worried parents resorted to intersex person is sometimes believed to be a bad omen, back street surgeries, with the predictable, harmful con- a curse, or a sign of punishment, witchcraft, or the dis- sequences? Changing beliefs and entrenched cultural pleasure of ancestors, intersex children are exceptionally practices takes time. We would be foolish to think that vulnerable to social stigma, rejection and even physical that it would not take decades for even well-conceived violence [1, 2]. It is against this contextual backdrop that I and funded education programmes to be successful in seek, in this paper, to develop a set of principles to guide efecting such change. So, my interlocuters had a point. medical teams and parents to make ethically justifed I would need to carefully consider the potentially very decisions about intersex paediatric surgeries. harmful unintended consequences of simple prohibi- While this article has arisen out of the situation in tion. It is for this reason that I here adopt a slightly less rural South Africa described above, it is of relevance in rigid approach that would make surgical procedures a other contexts, too. It is likely that if intersex babies are rare exception only to be used in cases where they might killed in South Africa, they are also killed in other coun- be necessary to protect an intersex person from serious tries on the continent, and indeed in other parts of the harm. world, where similar beliefs about intersex children pre- In this paper, my aim is not to argue for legal reform, vail. Intersex infanticide or attempted infanticide has but rather to address the problem of early intersex sur- been reported from Uganda [3], Kenya [4] and China [5]. geries1 by seeking to infuence the decisions and actions It is likely that the most vulnerable intersex infants are mainly of health care professionals. Partly this is because those born in rural communities, where births take place I am employed as a teacher of bioethics to such profes- in private homes and out of sight of authorities. Further- sionals. However, I am also mindful of the very signif- more, globally, intersex infants are at risk of being dis- cant role health professionals play in the decisions made carded, abandoned, neglected or mutilated [6]. Intersex by parents regarding the treatment of their intersex chil- individuals are also vulnerable to violence and even mur- dren. Parents frequently rely on their counsel as medical der after infancy and right through into adulthood. What experts, and their opinions are very infuential. While it all of this suggests is that there is a need for an approach is parents who must give consent for treatment and sur- to early infant intersex surgeries that is cognisant of the gery, it is often the physicians’ views that swing the out- very real threat to life and limb of intersex individuals. come [7, 8], even if (in some cases) it is only in conceding Te frst talk I gave on this subject was to staf and stu- to parental choices where these are not in the best inter- dents of the Philosophy department at a neighbouring ests of the child. Tus, I have chosen to essentially target university in Johannesburg. I took a hard line, arguing for health professionals and, through them, the parents of law reform to completely prohibit medically unnecessary intersex children. intersex surgeries before an age where intersex persons I have also chosen to focus on health profession- can give consent or at least express their wishes. During als because it is the case that resorting to early surger- question time, I was challenged on this by one of the aca- ies remains a common response to intersex births in my demics in the audience. He asked me whether I had con- home country, South Africa, as well as in many other sidered the possibility that in the South African context, countries. With what is already a comparatively high inci- prohibiting surgeries completely might have the unin- dence of intersex births [1], South Africa has no ofcial tended consequence of leading to even more intersex professional ethical guidelines for medical specialists on infanticide or abandonment. Perhaps, he said, the option such surgeries and is not party to the Chicago Consensus of surgery could potentially save lives, and removing the [9], the one multinational set of professional guidelines option could have disastrous consequences. Another person asked whether—in communities in which intersex persons are so feared—surgery might not sometimes be necessary to prevent a child from experi- 1 I deliberately use the term ‘intersex’ throughout this article, as this is appears to be the term preferred by intersex activist groups.
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