JME -- eLetters for Data Supplement:

Rennie and colleagues are to be welcomed for using the age of circumcision as an ethical vantage point rather than looking at the science behind circumcision as prophylaxis for the HIV infection. While recognising that the authors have merely set up points for discussion rather than dogmatic conclusions, the outcome of their approach is strongly dependent on the input data. I would like to reexamine their work from the perspective of a charity set up to represent the interests of patients who feel harmed by circumcision.

Discussion

Rennie and colleagues’ statement that neonatal male circumcision has significant cost and public health advantages must not go unchallenged. The evidence for the effectiveness of male circumcision in preventing diseases is weak. Only four randomised controlled trials have been published and all but one of these all relate to HIV. All of the HIV trials have been terminated early based on criteria set by the authors. Trials terminated early tend to overestimate the size of the effect.[8] The one RCT of circumcision to prevent UTIs concluded that circumcision did not reduce the number of recurrences of UTIs.[9] Evidence in respect of all other health benefits from circumcision is either contradictory or non-existent. There is a further contradiction inherent in the hypothesis that specialised immunological tissue in the foreskin facilitates HIV uptake while not helping to prevent other STIs or UTIs.

It is important to consider whether infant circumcisions performed with a view to preventing HIV should be deemed therapeutic. The term therapeutic normally implies the treatment of existing disease or deformity. The term prophylactic is perhaps more appropriate for interventions intended to prevent disease in future. Prophylactic surgery on normal unconsenting children normally raises serious ethical concerns.[10] Therapeutic surgery is normally justified on the basis of disease being present, non-invasive treatment being impossible, surgery being effective and valid informed consent being present. Non-therapeutic surgery is normally only acceptable when it is requested by an informed consenting adult. In the case of circumcision it seems odd that the one procedure should fit into both categories.

Rennie and colleagues seek to deny male children autonomy in respect of circumcision on the grounds that granting children autonomy would prevent childhood immunisations. While immunisations are invasive, they are minimally so. They remove no tissue and, for the greater part, leave no scar. As such they can be justified on an equipoise of the risks to the child from the immunisation against the benefits to the individual and society from the control of communicable disease. Such a line in the case of circumcision would be unjustifiable since circumcision causes a life-long burden in the loss of the normal specialised tissue, loss of the foreskin’s functions and a permanent change to penile appearance. Not all men are happy to have been reassigned as “round-heads” to meet the wishes or needs of someone else. A discussion of the ethical issues surrounding immunisation and infant circumcision has been presented by Hodges and colleagues.[11]

With regard to children and consent/assent, it would appear symbolic of the status of children in our society that we seek to inflict markings on their bodies that they may not agree to later. The change in appearance to the body and the loss of function remain with the individual as a life-long mark of their position in society. Why should any individual suffer the lifelong burden of something which - however desirable to society - was not actuallynecessary for the child? Dickenson has stated that the right for children to give consent is meaningless without the right to withhold consent.[12]

It is troubling that Rennie and colleagues further seek to erode children’s autonomy on the grounds of “the vagaries of adolescent decision making”. In societies where male circumcision is practised as a pubertal right these “vagaries” manifest in boys running away to circumcision “schools” against their parents’ wishes. This parallels our society in which rebellious teenagers seek invasive procedures and come home with unsightly tattoos and piercings which they may later regret. Parents here seek to limit their children’s autonomy for this reason. Moreover a concern that irreversible procedures might later be regretted by the young person drove the UK Parliament to pass the Tattooing of Minors Act 1969 which forbids tattooing of under-18s with no provision for parental consent.[13]

A parent’s power of proxy decision making in respect of their child stems from their duty to protect and nurture the child. As such it is right for parents to give consent to medical procedures which are in their child’s best interests; but it is also their duty to withhold consent on behalf of the child where the procedure would not be in the child’s interests. Here it is appropriate for the parents to exercise substituted judgement in respect of whether a child should have an intervention or not. In view of the fact that the vast majority of men reaching adulthood with their foreskin intact choose to retain it, it is difficult to see that parents have any legitimate right to consent to circumcision of their child except where there is unavoidable therapeutic need for the procedure. HIV prevention - even where the virus is endemic cannot reasonably override this principle in view of the harm inherent in circumcision and the lack of any certain epidemiogical benefit as noted above .

Rennie and colleagues appeal to a study in Botswana which finds that 55% of parents believe that if male circumcision is to be performed for HIV prevention then it should be performed on young children in a hospital setting. They state that it cannot be ethically sound without “community based research” into its acceptability. Should not sound medical evidence and ethical justification take preference to parental beliefs? Moreover community consent should never be allowed to trump individual autonomy.

Introducing circumcision into societies that do not presently have it in their culture should raise ethical concerns. Is it culturally appropriate to introduce circumcision into cultures that do not perform it? Is it acceptable to provide a therapeutic context - albeit without therapeutic need - to circumcisions in cultures which presently practice circumcision as a tribal rite? Is it right to reintroduce circumcision to cultures which have moved beyond child circumcision? Is it right to change local circumcision practices to introduce the American style of circumcision?

A further concern is that of the “circumcision apartheid” that may be introduced if circumcision is deemed the right thing. Will boys be cast out for “lack of circumcision”? Already there are reports of boys being bullied at school because their peers are circumcised and they are not. Sadly the boys who are victims of the bullying have been sent home until they get circumcised.[14] Thus the school colludes with the bullies to bring about the circumcision of these children rather than protecting them from the bullying and allowing them to retain their physical integrity.

It would of course be wrong to deny the introduction of circumcision on the basis that it is genital mutilation. Many medical procedures are mutilating and yet are still entirely appropriate in treatment practice provided they form part of a treatment hierarchy in which least invasive procedures are used in preference to more invasive ones and the mutilating treatment options kept as a treatment of last resort. As such, non-invasive measures such as ensuring that condoms, anti-viral drugs and vaccines (when developed) are available to those in poor countries must take precedence over the imposition of circumcision.

It is incumbent on the west to address the real problems of poor countries. Poverty itself is a risk factor for HIV and we must deal with this at source. We must ensure that African women are no so desperate that they have to sell sex to feed their children. We must ensure that condoms and pharmaceuticals are available to poor countries before we seek to impose American cultural practices - such as male circumcision - upon them. What are Africans to make of the fact that we demand that they don’t circumcise their girls but that they must circumcise their boys?

While Africa remains poor it could be a grave mistake to seek to introduce circumcision. The reality is that it will facilitate iatrogenic transmission of HIV, encourage male to female transmission[15] and bring about risk compensation. Another factor is that male circumcision may facilitate HIV transmission by reducing production of Langerin - a natural barrier to HIV transmission.[16] These factors could more than offset the 0.66 cases of HIV per hundred man years saved by introduction of male circumcision. We must never forget that the USA has the highest prevalence of male circumcision in the developed world and the highest prevalence of HIV. If in 20 years time male circumcision has made the HIV problems of Africa worse, it will then be very difficult to eradicate the practice.

References

http://www.bma.org.uk/ap.nsf/Content/malecircumcision2006, Accessed 8 March 2007.

Bailey RC and colleagues. Male circumcision for HIV prevention in men in Rakai, Uganda: a randomised trial. Lancet,2007:369;643-656.

Gray RH and colleagues. Male circumcision for HIV prevention in men in Rakai, Uganda: a randomised trial. Lancet,2007:369;657-666.

Williams N, Kapila L. Complications of circumcision. Brit J Surg 1993;80:1231-6.

Editors Choice. Knowing when not to operate. BMJ;318 (Anonymous leader).

Taylor JR, Lockwood AP, Taylor AJ. The prepuce: specialized mucosa of the penis and its loss to circumcision. Br J Urol 1996;77:291-295.

Taves D. The intromission function of the foreskin. Med Hypotheses. 2002 Aug;59(2):180-2.

Mills E, Siegfried N. Cautious optimism for new HIV/AIDS prevention strategies. Lancet. 2006 Oct 7;368(9543):1236.

Kwak C, Oh SJ, Lee A, Choi H. Effect of circumcision on urinary tract infection after successful antireflux surgery. BJU Int. 2004 Sep;94(4):627-9.

Fox M, Thomson M. A covenant with the status quo? Male circumcision and the new BMA guidance to doctors. J Med Ethics. 2005 Aug;31(8):463-9.

Hodges FM, Svoboda JS, Van Howe RS. Prophylactic interventions on children: balancing human rights with public health. J Med Ethics 2002;28(1):10-16.

Dickenson D. Children's informed Consent to Treatment: is the law an Ass? J Med Eth. 1994; 20:205-206.

Law Commission Consultation Paper No. 139 Consent in the Criminal Law, 1995.

http://www.news.com.au/story/0,23599,21224181-401,00.html,acessed 14 March 2007.

http://www.foxnews.com/story/0,2933,257559,00.html, accessed 9 March 2007.

de Witte L, Nabatov A, Pion M, Fluitsma D, de Jong MA, de Gruijl T, Piguet V, van Kooyk Y, Geijtenbeek TB. Langerin is a natural barrier to HIV-1 transmission by Langerhans cells. Nat Med. 2007 Mar;13(3):367-71.

Reasons not to test children at risk of adult onset disease

7 August 2006

Anneke Lucassen,
Clinical geneticist
University Southampton,
Angus Clarke, Professor medical genetics, Cardiff, Wales

Send letter to journal:
Re: Reasons not to test children at risk of adult onset disease

annekel{at}soton.ac.uk Anneke Lucassen, et al.

Dear Editor,

We congratulate Malpas on an eloquent paper but disagree with her conclusions: If it is appropriate to tell a child that they are at risk of some illness in adult life, Malpas argues, then it must be appropriate to tell them if they are actually going on to develop it. Such an action may of course be entirely appropriate for conditions which affect children, or where there is some medical intervention in childhood that may affect the later course of the disease, but Malpas does not consider such instances, rather the genetic conditions, such as Huntington’s disease where there is no available medical intervention and onset usually occurs in adult life. Many individuals at risk of HD, when allowed to make informed choices as adults, choose not to know their genetic status, even though they have lived with the knowledge of their own risk for many years. Indeed only a minority of those at risk go on to have predictive genetic testing. This remains the main reason to not test during childhood: Testing during childhood denies those children the informed choice as adults.

Malpas views the distinction between the knowledge someone is at risk (through knowing a disease is present in the family) and knowledge of genetic status, as an arbitrary and illogical cut-off, yet we suggest that this distinction is in place for very good reasons. Whilst it may be unhelpful and deleterious to a child to deny that the obvious clinical features a close relative is exhibiting have any relevance to them, it is not logical to conclude that they might then as well have a genetic test to confirm their own status. Imagine the following analogy: Most children will become aware at some point during their childhood that they are mortal. Some will struggle with this, and spend some time being very anxious about it, but at some point during childhood their risk of dying will be assimilated. Suppose it were possible, through some test, to predict the actual date of death. It does not follow that, just because the child is aware in childhood that the risk of death is there, that it is therefore now also logical to predict its actual date. Furthermore, if such a test were freely available to adults there might be a variable uptake: Some will want it to use this information to plan their lives while others would rather live in ignorance of such knowledge. Such difficult choices should be left until a time that adequate consent can be given.

The decisions that the child will want to make on the strength of the test results may initially appear reasonable but, on closer examination, the claimed benefits of knowledge vanish into the mist. End of life decisions cannot sensibly be made by a healthy young child who has some decades to live … and who is likely to experience good times as well as bad during those years. Decisions about education, career and relationships may be made by a young child but are more likely to blight their healthy years than an uncertain risk of disease at some point in the future. We all live with death ahead of us; those who may harbour a genetic disorder realise that this death rather than another death may await them – but to a child or teenager, their situation may not seem very different from that of their peers. To know that this particular death is what awaits you, however, is very different and could well be disturbing.

Early knowledge of genetic status may be helpful and lead on to important choices – if the test gives a favourable result. To assimilate an unfavourable result while avoiding the perception that this is a threat will be much harder if the child’s unfortunate genetic status is already known. For a child to retain “hope” when his parents are anxious and distressed about a test result will be difficult indeed. The “good” outcomes of bad test results arise in circumstances where the individual has chosen to go through testing as an independent person and in a very different context from that of a child whose parents are clearly anxious about their child’s future and eager to resolve their own uncertainty at the expense of their child’s capacity to make an independent choice in the future.

Malpas does not like secrets within the family. We can all agree that difficult information should be discussed as openly as possible but, if the information causes family members great distress or if the relevant biology is difficult to understand, there will be limits as to what it is helpful to share with a young child. Passing on the knowledge requires that the child is shown how to view it from a helpful perspective. This will be a real challenge for many families who have been devastated by disease. While many families often manage this task well, to give information about hard facts, rather than information about mere risks, might well prove too difficult for many. If an affected parent (or a parent at very high risk), has tested a child in the hope of finding that the child, at least, has been spared, and if this hope has been dashed, then the support that they can provide to help the child may be limited.

A powerful advantage of discussing the family illness with a child but explicitly deferring the moment of testing at least to their reaching adult maturity is that this emphasises both (a) that the decision about testing is serious, and (b) that this decision is for them to make – that they are trusted with this. So the family and professionals – if they agree – are jointly acting to acknowledge the difficult situation of the child and, at the same time, validating the child’s worth as an individual. This can be a very powerful message and potentially therapeutic. To move away from this position does not seem to us to be a move in the right direction.

Angus Clarke and Anneke Lucassen

Consent

Feasibility

Risk compensation

Epidemiological impact

HIV Testing

Burden on health services

Harms intrinsic to circumcision

Discussion