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.

Medical, not social?

A related suggestion is that infertility is in fact a social problem but is mistakenly viewed as medical.22 What might this mean?

One interpretation is that infertility is more like (say) bad housing, loneliness or poverty, than a disease. Perhaps this is what Pemberton has in mind when he speaks of how talk of ‘involuntary childlessness’, has given way to a medicalised discourse of ‘infertility’. The problem with this view though is that infertility usually is ‘medical’ in ways that bad housing and poverty are not. Its proximate cause is often biological, and the main option for alleviating it is medical treatment.^v This goes for infertility in general but applies especially forcefully to AUFI; it would be hard to sustain the claim that not having a uterus is a merely social phenomenon.

A second way of understanding the ‘social not medical’ claim is as the suggestion that infertility is more difference than disorder. One might, for example, compare infertility to being unusually short, or having a face or body-shape that does not conform to prevailing aesthetic norms. Characteristics like these, so the argument goes, are differences and not diseases. They are often disadvantageous to the person (and may sometimes even be ‘treated’—eg, through cosmetic surgery or human growth hormone). However, they are not diseases because the disadvantage associated with them is caused wholly or primarily by social discrimination. In cases like these, it may be argued that supporting medicalisation (by funding ‘treatments’) would be wrong because it would waste valuable resources and, perhaps more importantly, because to do so would be to collude with discrimination. For example, having darker skin in a racist (predominantly ‘white’) society is highly likely to be disadvantageous. Yet, while this is so, it would be both inefficient and a wrongful collusion with racism for the state to respond by providing a medical fix (such as skin whitening) for this social problem.

In the case of infertility, the parallel claim is that there is nothing really wrong with not being able to have children (just as there is nothing really wrong with being black, short, or ‘unattractive’). But, in our ‘pronatalist’ society, not being able to have children is disadvantageous because of discriminatory attitudes and practices. Some of these are general pro-parental ones applying to men and women alike such as the view that non-parents’ lives are inferior, with less meaning and purpose. Others more adversely affect women and reflect sexist attitudes, which encourage us to see women as essentially or naturally mothers, and as incomplete or defective if they remain childless.22 ,23

So, is funding infertility treatment in some respects like providing cosmetic surgery so that people can fit in with society's aesthetic norms, and like skin whitening in response to racism? Our view is that, although this critique of the medicalisation of infertility is not wholly without foundation, it fails to provide a strong enough reason to deny funding for infertility treatments in general or UTx in particular. For, although the harmful effects of infertility are made worse by pronatalism and sexism, discrimination is not the sole cause of that harm, nor is it the case that there would be no harm if it weren't for the discrimination.

There are two reasons for this. As has already been noted, AUFI does involve the subnormal functioning (or absence) of a bodily part or process and does deprive women of the option to become pregnant, and this would be so even in a utopia without sexist and pronatalist attitudes. Regarding the desire to parent, we concede that this may be encouraged and influenced by such attitudes. It may be that more women want children, and that those who want children desire them more forcefully, because of prevailing ideologies. However, it is implausible to see such desires as solely caused by these ideologies; even in a society with no sexism and pronatalism people would still want children. Fewer perhaps would want them, maybe they would want them less forcefully, and crucially maybe those who couldn't have them would feel less bad about it. But it is implausible to suppose that a desire for parenthood is wholly down to pronatalism and sexism.

Infertility then is in a similar position to many (other) physical disabilities. Its proximate cause is what we might term impairment: the ‘malfunctioning’ of a bodily part or process leading to a lower than (statistically) normal level of ability. Sometimes this has direct negative effects (ones not dependent on social context) but other effects are caused or exacerbated by social context: disability discrimination, and in the case of infertility, pronatalism and sexism.18 ,24 ,25 Thus, however interpreted (and we have tried here to construct some sympathetic interpretations) the view that infertility is ‘social not medical’ is implausible; this is true a fortiori of AUFI, which has very clear biological underpinnings. Its negative effects may well be exacerbated by pronatalist and sexist ideologies but these are certainly not their sole cause.

Finally, we have allowed an assumption to be made in this section that should not be allowed to stand unchallenged: the suggestion that the state should only fund interventions that address disease. While this is not an issue on which we need to take a stand here, there may be sound policy reasons not to have this restriction. Imagine, for example, that it is entirely normal for people to have minor aches and pains: in other words, these are not the symptoms of disease but just part of the human condition (like feeling tired at the end of a busy day). If these aches and pains could be removed cheaply and beneficially through medication would there not be a case for state funding? Similarly, what about people who are anxious or shy but not sufficiently so for them to qualify as mentally ill? Again, if such things could be dealt with cheaply and beneficially through counselling or medication, would there not be a case for funding? We suggest therefore that there may be instances in which it is appropriate for the state to use its resources to address issues other than disease. And, if this is right, that would further weaken the argument which says that countries with socialised medical systems should not fund UTx because what it ‘treats’ is not a ‘proper’ disease. For even if it were not it could still merit ‘treatment’.

The option of adoption

Of the three options considered here, adoption is the cheapest. Like UTx, adoption provides social parenthood. Yet it fails to provide benefits associated with UTx such as the opportunity to gestate and parent one's own genetic offspring. It also seldom offers the opportunity to parent a child from birth and may require a willingness to raise children with complex emotional needs and who are less likely to physically and/or psychologically resemble their parents.

Whether or not adoption should be seen as a ‘good enough’ alternative to UTx thus depends greatly on which interests state-funded infertility treatment is, and should be, designed to promote. If these are strictly limited to one: rearing children (social parenthood) then the benefits that adoption fails to offer, especially in cases where the child offered is an infant, may rightly be deemed to be ‘frills’ or ‘optional extras’. That is, while such benefits may be desired, these desires are not ones that the state has an obligation to satisfy. If, however, the accepted aims of state funding for infertility treatment are broader, including enabling individuals to found a family in the way they desire, the suggestion that adoption is a sufficiently good alternative is questionable.

Were the state forced to pick just one interest as providing the rationale for funding infertility treatment, a desire for social parenthood seems by far the strongest candidate. Social parenthood after all can provide life-long benefits to those who seek it and a transformative experience for which there are few (if any) substitutes.32 ,33 Furthermore, few would suggest that funding should be provided to those who are infertile and wish to procreate but not raise a child. Yet, while this is so, one need not, in affirming the primacy of one aspect of parenting, necessarily deny the significance of others, or indeed, the significance of the journey to parenthood itself.

That the route taken in pursuit of a desire may be just as significant to an individual as its attainment can be illustrated by returning to Motability, a scheme providing adapted vehicles to persons with disabilities. Those who seek independence and interpersonal contact by way of the Motability scheme could achieve significant levels of both by the provision, not of a vehicle, but an internet connection. They may shop for groceries and clothing online, keep in contact with friends and family via social media and Skype and work or attend school/university remotely from home. Yet, despite this, it is far from clear that such online alternatives are ‘sufficiently good’. For the ability to try on clothing, pick groceries rather than having them picked by others, have coffee with a friend, rather than at home while on Skype, etc, are all, although not strictly necessary for independence or social interaction, goods liable greatly and positively to impact upon well-being.

As in Motability, where the social and experiential benefits afforded by cars, as opposed to internet connections, might justify the more expensive option, the same applies when comparing UTx and adoption. For, even if the primary aim of infertility treatment is the provision of a child, there seems little reason to assume that the social and experiential benefits many receive by gestating or being genetically related to their children may not go at least some way towards justifying the additional costs of UTx. These benefits can include experiencing pregnancy and birth, interacting with others as a pregnant woman, bonding with one's child prenatally, keeping parenthood and procreation ‘within the family’ and avoiding potential perceptions of rejection in the future should one's child seek out his ‘birth’ parents, carrying on a family line, and creating a physical manifestation of the love between two individuals.

As discussed in the preceding section, perhaps the desire for genetic and gestational parenthood is at least partly a result of cultural and social sexist and pro-natalist bias, which results in the unwarranted inflation of the significance of such desires.34 But even if this is so, the fact remains that until such time that this bias is eliminated (and, most likely after) the inability to have one's own genetic and gestational children will have significant and enduring negative effects on the welfare of many people.35–38 Indeed, regardless of one's feelings on this matter, it should be noted that adoption remains an alternative for virtually all infertile couples alike and, excepting perhaps cases of artificial insemination (which cost only £500–1000 per cycle39), is liable to prove more cost-effective than virtually all forms of ART. Thus, as in the case of the arguments dealt with in previous sections, if the availability of adoption constitutes a reason to withhold funding for UTx, it also, for reasons of consistency, provides a reason against funding most other fertility treatments, including IVF.

Is surrogacy a sufficiently good alternative?

A more focused argument that might tell against funding UTx but not all other fertility treatments is the suggestion that surrogacy, unlike adoption, is a cheaper and sufficiently good alternative. For, although surrogacy fails to offer at least one of the benefits provided by UTx (gestation), the benefits it can offer—social parenthood from the moment of (or very soon after) birth and genetic relatedness—are far more closely matched to UTx than those offered by adoption. Given this, should we view surrogacy to be a sufficiently good alternative—one that women with AUFI can reasonably be expected to accept—in virtue of the extra costs associated with UTx?

The thought that surrogacy is ‘sufficiently good’ seems to depend on at least one of the following views.

1. Experiencing gestation is relatively unimportant compared with being a social parent from birth.

2. Experiencing gestation is relatively unimportant compared with genetic relatedness (ie, being genetically related to one's own children).

3. Experiencing gestation is no less important than genetic relatedness, or parenting from birth, but is nonetheless insufficiently important to justify the additional costs associated with UTx.

We will leave the last of these to one side, since it is not so much an objection in principle to funding UTx as an assertion that it is presently too expensive.

What about the first two positions though?

The first view, that experiencing pregnancy is relatively unimportant compared with the opportunity to parent a child from birth is initially plausible because of a point made earlier: that the primary purpose of ARTs is to deliver an opportunity to parent and we would (for example) find the idea of publicly funding ARTs for the purpose of enabling women with no interest in parenthood to experience pregnancy as bizarre and unjustified. That said, the importance of pregnancy must not be overlooked or understated for at least three reasons. First, as noted previously, the experience of pregnancy and childbirth is something to which many women attach tremendously high value and is often thought to facilitate ‘bonding’ with one's child. Second, some philosophers have argued that gestation is as important as, or more important than, genetic or social ties when it comes to establishing maternal status and maternal moral claims over the child.40 ,41 Third, as we will discuss in a little more detail later, many jurisdictions, including the UK, have chosen to privilege gestation when deciding who the legal mother is at birth.42

So, although we concede that experiencing gestation is relatively unimportant when compared with social parenthood, gestation does still seem to be important in the ways outlined above. Thus, we might think of UTx as being more akin to Scalp Cooling than Golden Fillings. In Scalp Cooling nearly everyone would admit that retaining one's hair is less important than having one's life saved from cancer, yet few would view it as trivial. Similarly, we might say of gestation that it is less important than having a child to look after, but not unimportant. Hence, as in Scalp Cooling, paying more so that women can experience pregnancy may still be a legitimate candidate for public funding.

Similar considerations apply to the second view (the suggestion that gestation is relatively unimportant compared with genetic relatedness) and again it is not at all obvious that genetics should straightforwardly be privileged over gestation. For, although this view is prevalent in certain religious and cultural contexts^ix, and would historically have been left unchallenged—due, most likely, to the role genetic relatedness played in legitimacy, inheritance and succession rules—there seems little reason to suggest that the contribution of the genetic material that provides the ‘form’ for a child is any more significant to parenthood than the contribution of the matter from which a child is constituted.44–46 A study undertaken in 1997 by Ravin et al who surveyed 106 infertile men and women of reproductive age in a fertility clinic in the US lends support to this suggestion. It uncovered that in relation to a preference for genetic or gestational parenthood where only one is available, while the majority of men preferred a genetic link to their offspring for obvious reasons, the opinion among female respondents was split 52/48% in favour of gestational parenthood.47

Finally, there are various practical reasons for thinking that surrogacy is not a sufficiently good alternative.

First, surrogacy inevitably involves an additional third party (the surrogate) in reproduction and, while many people's experiences of surrogacy are positive, this is not something that everyone will welcome.48

Second, surrogacy raises ethical issues that UTx, especially using deceased donors, does not. Many, for example, have raised concerns about consent and exploitation in both commercial and altruistic surrogacy arrangements49 ,50 and others may hold that even in the absence of such concerns it is preferable for those who wish to procreate to undergo the risks associated with pregnancy and childbirth themselves rather than ‘outsourcing’ them to third parties.

Third, there is the difficult legal position of surrogacy in many countries. For although there are some states in which laws regarding both commercial and altruistic surrogacy are quite permissive, such as Russia,51 India,52 and Israel53 which permit both altruistic and commercial surrogacy arrangements, this is not the norm. Many states such as France,54 Germany55 and Switzerland56 ban the practice altogether, and others such as the UK,57 Canada58 and New Zealand59 permit only altruistic arrangements and hold surrogacy contracts to be unenforceable. This has led many to travel abroad from more restrictive to more permissive nations in order to secure a surrogate, generating legal problems such as stateless children.60 It has also, however, compounded concerns noted above regarding the exploitation of both surrogates and commissioning parents in those permissive countries that lack the resources or infrastructure to regulate the practice satisfactorily.49 ,50

So, should we view surrogacy as a sufficiently good alternative, given the costs associated with UTx? As we have conceded, it may well be the case at present that the extra benefits delivered by UTx are insufficient to justify the considerable extra expense that it entails. However, if UTx became cheaper, the case for viewing it as more akin to Scalp Cooling than Golden Fillings could become sufficiently strong to justify funding. For, while the primary purpose of ARTs is to provide a child, the experience of pregnancy—although less important than social parenthood—is not unimportant, at least for those who desire it. In addition, we must keep in mind the far from ideal social and legal position of surrogacy in many countries. This makes surrogacy much less attractive to prospective parents than it could be and makes the demand that women with AUFI should ‘settle for’ surrogacy correspondingly less defensible.