The paper proceeds as follows. It assumes, at least for the sake of argument, that UTx will become sufficiently safe and cost-effective to be a candidate for funding and then asks, given that, what objections to funding there might be. Three main arguments are considered. The first suggests that UTx should not be publicly funded because doing so is inconsistent with governments’ obligations to prevent climate change and environmental pollution. The second claims that UTx does not treat a disorder and is not medically necessary. Finally, the third asserts that funding for UTx should be denied because of the availability of alternatives such as adoption and surrogacy. Of these, the first two arguments apply to assisted reproductive technologies (ARTs) in general and offer an opportunity to reflect on wider issues about funding for infertility treatment. The third, however, is narrower in scope and could, in certain forms, apply to UTx but not to other ARTs.

The most significant obstacles to the availability of UTx are presently scientific and technical, relating to the safety and efficacy of the procedure itself. However, if and when such obstacles are overcome, the most likely barriers to its availability will be social and financial in nature, relating in particular to the ability and willingness of patients, insurers, or the state, to pay. Thus, publicly funded healthcare systems such as the UK's National Health Service (NHS) will eventually have to decide whether UTx should be funded. Given however that even funding for IVF generates public hostility, and is only patchily supported, it is likely that any proposal to fund UTx will be controversial. With this in mind—assuming that UTx becomes a safe and effective treatment for AUFI and that, as time passes, its cost is reduced such that it meets the normal cost-effectiveness threshold laid down by institutions such as the UK's National Institute for Health and Care Excellence (NICE) of £20–30 000 per quality-adjusted life year (QALY) 8 —this paper asks whether there would, in such circumstances, exist any compelling reason for the NHS not to fund UTx. i

Since 2000, 11 human uterine transplantation procedures (UTx) have been performed across Europe and Asia. 1–3 Five of these have, to date, resulted in pregnancy and four live births have now been recorded. 4 , 5 UTx is a potential treatment option for the 1 in every 500 women worldwide of childbearing age 6 with absolute uterine factor infertility (AUFI): an umbrella term covering fertility problems occurring as a result of either a complete lack of a uterus due to congenital abnormality or previous hysterectomy, or the possession of a malformed or diseased uterus. 7 Individuals with AUFI presently have very limited options for parenthood: essentially adoption or surrogacy.

These arguments are compelling and apply to the examples above and to the major concerns of this paper: funding for ARTs in general and UTx in particular. Thus, in the case of IVF, if it were argued that the state should not provide funding because of its interest in preventing climate change, we should reply that—if that is its concern—then it should (for example) tax all human reproduction rather than singling out those who are pathologically infertile for especially negative treatment. Much the same goes for UTx. We broadly agree therefore with the view put forward by Karnein and Iser that: The burden of reducing overpopulation has to be distributed equally and cannot be shouldered by those in need of ARTs and reproductive donation alone. 11

Why is this unfair? One reason is that if discouraging environmental pollution were as important as suggested, then everyone, not just those with medical/mobility needs, should be given an incentive not to pollute. So, ‘singling out’ people with disabilities raises the question of whether the environmental reason offered is little more than a thinly veiled attempt to hide the real motive behind such denials of treatment, disability discrimination. A second reason for regarding these cases as unfair is the scale of the costs incurred by those who have medical/mobility assistance withheld. The consequences for such individuals are potentially very serious indeed: not being able to fly or—worse—drive. However, if (extra) ‘carbon taxes’ were levied at a low level on the entire population instead, we could presumably achieve a similar (or greater) reduction in emissions, increase the tax take and spread the pain much more equally, thinly and fairly.

These examples are meant to generate the intuition that what is proposed is unfair. What seems particularly unfair is that persons with disorders or disabilities have services withheld from them on environmental grounds while others are allowed to continue polluting without suffering anything like the same level of personal cost.

This is that the costs of preventing climate change and pollution should not be borne disproportionately by the infertile; it would instead be fairer, and perhaps also more effective, to bring about population control in other ways. There could, for example, be ‘tax breaks’ for non-reproducers, or public education programmes aimed at discouraging reproduction. To illustrate the attractiveness of this view, consider these examples. iii CAS Many people suffer from a pathological condition called Commercial Airline Syndrome (CAS), which is caused by a defect in the inner ear. The main symptom of CAS is severe pain during take-off and landing and for several hours afterwards. CAS sufferers find air travel unbearable. CAS can be cost-effectively cured using surgery. However, the government refuses to provide funding on the grounds that doing so would enable people to contribute to carbon emissions and climate change. Motability The Government financially supports a scheme called Motability, which allows persons with disabilities and/or their families and carers to lease a new car, in some cases one with special adaptations. Opposition politicians however object to this scheme as follows: if an important government objective is to discourage private car use, why are we spending public money to support car use amongst people with disabilities, thereby boosting carbon emissions and adding to congestion?

Let's allow (at least for the sake of argument) that a legitimate aim of state policy is reducing environmental pollution, such as greenhouse gas emissions, and that reducing or containing population size is a necessary means of achieving this. Would that give the state a reason not to fund UTx? If the answer is ‘yes’ then such considerations tell against funding for ARTs of any kind. UTx is, after all, not uniquely vulnerable to these objections; they apply equally to all IVF, and indeed more pressingly to IVF given the numbers involved. ii This argument is, however, liable to a serious objection.

Is infertility a disease?

A second line of attack on public funding for UTx lies in the suggestion that infertility is not a ‘real’ or ‘proper’ disease. This is an interesting suggestion, although one that immediately runs up against the fact that infertility does enjoy ‘official disease status’. For example, the International Committee Monitoring Assisted Reproductive Technologies (ICMART) and WHO Revised Glossary of ART Terminology give the following ‘clinical definition’ of infertility: A disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse12 iv

However, official definitions notwithstanding, there remains suspicion about the proposal that infertility (a fortiori AUFI) should be classified as such. That such is the case is demonstrated by the results of a large-scale survey conducted by Adashi et al in six European countries, the USA and Australia regarding public perceptions of infertility and its treatment. In response to the statement ‘infertility is a disease’ only 38% of respondents agreed.14 As Ravitsky et al note regarding this study: The implications of the question are clear: if perceived as a disease, public funding for its treatment is construed as justified and what remains to be determined is its prioritization in relation to other required treatments competing for limited resources…if not, funding it may not be justified from the outset.15

The following comments by Pemberton encapsulate this sort of scepticism: In the 1960s, those unable to conceive were referred to as the ‘involuntary childless’. Today, this has been reframed within the discourse of biomedicine as ‘infertility’, and it reflects an increasing tendency for medicine to step in to manage and provide solutions to social problems. This, of course, does not detract from the upset that childlessness can bring. But, this is grief based on a sense of failure because of an ‘abnormality’ that is culturally determined. I am not arguing that the infertile should not be free to seek assistance with conception if they choose it. My issue is whether they are entitled to treatment under the NHS. While childlessness is distressing, it is not associated with long-term disability, morbidity or mortality. It is not a disease. Rather, it is about people unable to have something that they want. This is not what the NHS is there to remedy.16

Two main claims underlie Pemberton's comments; these will be explored in the subsections that follow. The first is that infertility should not be classed as a disease because it is only harmful to people with certain desires. The second is that infertility is a social problem but is mistakenly viewed as medical instead.

Desire, not disease? For individuals who do not want children, infertility is, at worst, a neutral characteristic and may even prove slightly advantageous, eliminating the need to worry about accidental pregnancy. Indeed, before the advent of effective contraception and safe abortion services, infertility would have been highly advantageous to any women who didn't want children (and still is in many parts of the world). Thus, it may be argued that infertility is not a disease because its ability to cause harm depends upon people's preferences.17 However, while infertility is only harmful when the sufferer is in possession of certain desires, the same is true for many diseases and disorders; infertility is by no means unique in this respect. Take colour-blindness, for example. Arguably, while there are everyday disadvantages associated with colour-blindness, the level of harm suffered will be relatively modest provided that the person lacks certain preferences. If, however, the person wanted to be an electrician, a painter or a pilot then (at least in some countries) her ambition would be thwarted with potentially serious consequences. Colour-blindness then, while always a disability or impairment, is only seriously harmful when certain desires are present, and in certain social contexts.18 A different kind of case in which desire and social context play an important role is where the infliction of injury confers sufficient benefit to make it worthwhile for the individual, all things considered. Perhaps the paradigm example of this is the ‘Blighty Wound’. A significant number of soldiers in World War I, faced with the prospect of death and disability, would inflict upon themselves a severe but not life-threatening injury in order to return home and avoid the front line. Horrifying cases have also been reported in which healthy young people have had limbs amputated in order to become more effective beggars, and trapped climbers have severed salvageable limbs in order to escape. In such cases, because of the person's desires and because of the social context, there may be no net harm to the individual, and there may even be benefits, all things considered. But we should nonetheless still say that the person has acquired a pathological condition, an injury or what Closer, Culver and Gert usefully term a ‘malady’.19–21 What follows from considering these cases? First, many pathological conditions are only harmful in the presence of certain desires. Hence, the fact that the major harms associated with infertility are dependent on the desire to have children does not mean that infertility cannot be a pathological condition. Second, many pathological conditions are only (directly) harmful in certain social contexts and may even be beneficial in others. So again, even if this is true of infertility, this does not mean that it cannot be a disease.