A solution in need of a problem: making UFI the problem that UTx-IVF solves. The first discourse coalition
In the summer of 2011, many Swedish newspapers reported about a historical surgical procedure that was about to be performed by a Swedish research team. For the first time, a mother was donating her uterus to her daughter (Asplind 2011; Åkerman 2011). This development was the result of several years of hard work in the lab and in animal models (Larsson 2003; Sundin 2003)—work that had made the researchers particularly highly skilled and now able to move on to UTx-IVF in humans, the reports stated (Hansson 2003; Kasvi 2012). Described as a “unique”, “ground-breaking” and “first in the world” event, UTx-IVF was framed as an unprecedented solution. Borrowing from Koch and Svendsen (2005), we ask; how did this framing of UTx-IVF as an extraordinary innovation contribute to shape the problem that UTx-IVF was meant to solve?
Throughout the first discourse coalition, the overarching message of the actors was clear: UTx-IVF was meant to deal with one specific problem, namely UFI. The description of the problem—that women with a non-functioning or with no uterus were unable to “have children” (Alvarsson 2012; Karlsson 2012; TT 2011) or to have a child of their “own” (Medicinsk Access 2014; Rogsten 2014; Svenberg 2014)—drew its force from the assumption that “having children is a central aspect to many women in the world” (Gisselquist 2014).Footnote 8 This assumption thus squared well with contemporary discourses in which a desire for children is portrayed as an assumed dimension of a “normal” life course (Gentile 2013).
Accounts of the problem were also complemented with statistics on the prevalence of UFI. While it was occasionally noted that “no exact numbers on how many women are affected by uterine factor infertility are available” (William-Olsson 2002), or that UTx-IVF might become a solution for some of the women affected by UFI (Bratt 2012; Sims 2017), the statistics presented typically underscored how common the condition was. As some examples, actors in this coalition stressed that UFI affects as many as 1.5% of all women in the world (Hansson 2003); is shared by approximately 200,000 women in Europe (Tjernberg 2014); and affects thousands of women in Sweden alone (Gisselqvist 2014; Hillgren 2012; William-Olsson 2002). In some cases, the prevalence of UFI was equated with involuntary childlessness, so that references to statistics boosted the number of potential women who might want to alleviate their desire to have children and become pregnant through UTx-IVF. This framing of UFI as common problem contributed to articulating the demand for UTx-IVF.
In order to understand how the problem was defined in the first coalition, it is important to consider two more aspects. First, the problem was at times further specified as a matter of biology in accounts in which genetics and gestation were described as, or assumed to be, central to women with UFI. For example, it was stated that “alternatives for women without a uterus who want a biological child” have been lacking (adoption, then, was not considered to be an equal alternative) (Bratt 2012), and that UTx-IVF could enable women with UFI to “give birth” (Alvarsson 2012; Berglund 2009) or to “carry” a, or their “own”, child (Lagerwall 2001; William-Olsson 2002). Such accounts contributed to positioning UTx-IVF as not only a solution, but also the solution to UFI with respect to being able to provide something that alternatives such as surrogacy and adoption could not. As the desire to have “biological” children or children of “one’s” own was framed as common to women in general, such accounts also contributed to positioning UFI as equal to “any other” form of infertility. Second, accounts stressed that women with UFI was a group suffering in silence (Mattsson 2014; Westman 2015). Highlighting the impact that the problem had on the lives of those affected, such accounts contributed to articulating the demand, and to the acceptability of UTx-IVF, as they underscored how UTx-IVF contributes to relieving suffering. These three features—women’s desire for children, the role of biology, and suffering in silence—provided a framework for delineating UFI as the problem targeted by UTx-IVF.
We now turn to the solution to the problem of UFI. The first discourse coalition described UTx-IVF as the solution, and as equal to any other infertility treatment. This was clearly spelt out when the need of, and demand for, UTx-IVF was justified. This was the case, for example, when one person in this coalition underscored that if you happen to be born without a uterus, or happen to develop cancer at a young age, you “should be able to get treatments.” Others who were interviewed underlined that infertility, irrespective of the underlying medical condition, should be treated, and that IVF was quite common:
…childlessness is classified as a disease and we are supposed to cure disease. For example, at least a couple of percent of all children who are born today are testtube babies. (Berglund 2009, p. 22)
Furthermore, the “like any other” reasoning recurred in relation to the specific transplantation process. This was the case when UTx-IVF was compared to other forms of organ donation in ways that emphasised the ordinariness of the procedure. “[T]o us, there is nothing strange about me receiving my mother’s uterus”, one of the women who had been initially accepted into the trial at Sahlgrenska said, and continued, “[I]t’s like a kidney or any other organ” (Svanberg 2011). Similar analogies, but with respect to hysterectomies, were used when medical professionals described the risks of the procedure.
The surgery is no more risky than an ordinary hysterectomy, in which the uterus is removed. This is done 10,000 times every year. (Svanberg 2011)
By aligning UTx-IVF with ordinary hysterectomies and asserting the low risks of these,Footnote 9 the risk of surgery in UTx-IVF was positioned to be similar to the risks of “any other” hysterectomy. The use of analogies thus helped to frame UTx-IVF as “simply” a matter of using already well-known procedures and standardized techniques in contemporary medicine—such as IVF, transplantation and hysterectomy. Enabling in this way the argument that UTx-IVF is medically quite uncomplicated, the use of analogies contributed not only to defend the procedure, but also to articulate its acceptability. Risks for donors—who would undergo surgery that at times lasted as long as 13 h—were not discussed.
However, the first discourse also drew on a “like no other” reasoning, which positioned UTx-IVF as a new and unique solution. Such accounts presented one of the medical professionals performing the transplantations, Mats Brännström, as “the miracle-maker” (Svenberg 2014). They also underlined that UTx-IVF was different from alternatives such as surrogacy and adoption. UTx-IVF was said to offer “hope” to a specific group of “childless individuals” (Aftonbladet 2007; Erfors 1998; TT 2001) for whom there previously “had been no treatment alternatives at all” (Pavlica and Rogsten 2014). Occasionally, UTx-IVF was specifically said to offer “opportunities to help these women to experience the joy of motherhood through transplantation” (Lagerwall 2001) and help women who have ovaries but lack a uterus to become real mothers (Funcke 2009; Tännsjö 2009). In this way, gestation was positioned as central to “real” motherhood. Further, UTx-IVF was envisaged as being “like no other” solution, both with respect to novelty and with respect to its unique deliverables (gestation and birth of a genetically related child).
Of particular relevance to our focus on ethical issues was the way in which the “like no other” reasoning was drawn on to claim that UTx-IVF could and did circumvent ethical concerns. This often took place in accounts in which UTx-IVF was differentiated from surrogacy. In such instances, the extraordinariness was emphasised, as UTx-IVF was positioned as the more ethical alternative. As an example, a doctor in the Swedish research trial was quoted as saying that women who act as surrogates often are “taken from” “exposed” countries. This was considered to be ethically troubling and helped to position UTx-IVF as the more ethical alternative (Kasvi 2012). Furthermore, and as a different ethical argument for UTx-IVF in preference to surrogacy, UTx-IVF was described as implying that the intended mother takes on all the risks associated with the IVF pregnancy, instead of a surrogate mother. Comparing in this way UTx-IVF with transnational surrogacy (and presumably to commercial surrogacy, though that was not explicitly stated), the first discourse coalition positioned UTx-IVF as ethically preferable to surrogacy.
Furthermore, while the “like any other” reasoning emphasised ordinariness, the “like no other” reasoning emphasised specificity. Together, they worked to justify the development of UTx-IVF, to claim its acceptability, and ultimately to present it as the preferred solution. This definition of the solution and the problem contributed to delineate a particular group of women with a specific need, which in turn—given the particular framework of desires, demand and biology—was presented as having a health care need that should be acknowledged and fulfilled by the healthcare system. In terms of ethics, the first discourse coalition focused on the benefits of UTx-IVF (relieving suffering, offering hope, meeting the desire for gestational and genetic motherhood), and on the relative benefits in comparison with surrogacy (in that UTx-IVF is assumed not to exploit women from “exposed” countries and not to shift the risks). UTx-IVF was thus presented not only as a novel but also as an unprecedented solution, both with respect to its deliverables and with respect to pressing ethical concerns.
Challenging the solution and partly the definition of the problem. The second discourse coalition
The second discourse coalition only partially accepted the first coalition’s definition of the problem: that women with UFI who wished to become genetic and gestational mothers had not received help from the health care system to achieve this. The second coalition questioned in some respects the idea of genetics and gestation as central to motherhood, and questioned whether UTx-IVF was the solution to the problem as defined in the first coalition (Hallén et al. 2010).
Further, in contrast to the use by the first discourse coalition of “extraordinariness” to underscore the accomplishments of UTx-IVF, extraordinariness was used by the second discourse coalition to emphasise the challenges, problems, and risks of UTx-IVF. These were described as “extraordinary.” For example, the risks of the immunosuppressive treatment required were emphasized (Hallén et al. 2010; Hamberger 2012), and concerns were raised about the limited knowledge of pregnancy during immunosuppressive treatment, and about the fact that past knowledge had been acquired solely from pregnancy among kidney transplant patients (Hamberger 2012).
Concerns were also raised about UTx-IVF being “high-tech”, extremely complicated, and time-consuming. The procedure was described as involving substantial risks for both the child and the mother. The risk for uterus rupture was described as “not small”, and it was stressed that UTx-IVF would require delivery by caesarean section since vaginal birth would be too risky (Hamberger 2012). The probability that the child would be born prematurely, and the difficulty of assessing the risks (given that UTx-IVF was still conducted only within research trials) were further arguments that contributed to positioning UTx-IVF as extraordinarily problematic (Hallén et al. 2010; Johansson and Sahlin 2011). The second discourse coalition also pointed out, occasionally, that UTx-IVF might not be an alternative for all women with UFI. As an example, the first woman who gave birth as the result of UTx-IVF, was quoted saying that UTx-IVF “is not an easy choice for everyone”, and that you must be prepared for “a long process with many medical obstacles and hardships” and “have great hope, courage, inner strength and a determination to be able to go through that which is required of you” (Hansen 2015).
Furthermore, UTx-IVF was contrasted with surrogacy in lines of reasoning in which surrogacy was described as an alternative. On the one hand, some actors raised concerns about surrogacy being ethically more complex than UTx-IVF, given that it involved a surrogate mother who was expected to undergo the pregnancy and hand over the child after birth (Hallén et al. 2010). On the other hand, surrogate motherhood was described as already in use and established in other countries with good results (Hallén et al. 2010; Hamberger 2012). It was also emphasized that “thousands” of healthy children have been born after surrogacy in different parts of the world and that psychosocial studies show that these arrangements tend to function well (Hamberger 2012). Why, wondered, for example, one author, should not surrogacy and UTx-IVF not be considered on the same grounds? Specifically, she wrote,
We are genuinely happy when hearing that some women may have regained a uterus through an operation. Why can we not rejoice in the same way when it comes to the possibility for childless people getting help from a sister who wants to become a surrogate mother? (Wålsten 2012)Footnote 10
Other actors within this coalition argued that surrogate motherhood was “considerably easier, safer, and cheaper” than live UTx-IVF (Hallén et al. 2010). Specifying the idea of safety, a medical doctor explained that surrogacy was “medically safer” (Hamberger 2012) and it was suggested elsewhere that there was no reason to financially support UTx-IVF when “the alternative is an easy political decision to allow surrogate motherhood” (Hallén et al. 2010, p. 107).
Further, the second discourse coalition also contrasted UTx-IVF with adoption. Two medical ethicists asked:
Does it have to be a child of one’s own, with one’s genes, conceived through IVF treatment, carried in a transplanted uterus and delivered by caesarean section? Is adoption ruled out? (Johansson and Sahlin 2011, p. 1348)
In spelling out the various steps of live UTx-IVF, but none of the various steps of adoption, this description could be read as positioning UTx-IVF as not such an easy route to the desired child, after all.
When different routes to a child were compared with each other, actors in the coalition were also concerned about the costs involved. Since it was expected that UTx-IVF would be costly, it was argued that it was necessary to discuss whether the procedure, just like adoption, should be paid for (at least partly) by those who want it (Lernfelt 2014). One ethicist was quoted saying:
I don’t question the desire for children, but it is important to weigh the risks of the research against societal benefits and maintain a critical stance to how money is spent. (Nasr 2012)Footnote 11
In terms of ethics, the second discourse coalition focused on the risks for the mother and the child, and on some occasions described surrogate motherhood as a preferable route that involved less risk. UTx-IVF was said to be not worth the risks involved. Further, either it was assumed that the value of gestation does not outweigh the risks involved in UTx-IVF, or the value attributed to gestation was questioned. The use of contrasts enabled the value of gestation and/or genetics to be questioned. In these ways, this discourse coalition partly challenged the societal entrenchment—the making of UTx-IVF into something acceptable—articulated by the first discourse coalition.
Challenging the solution and how it defines the problem. The third discourse coalition
The third discourse coalition levelled more radical critique: it challenged the way in which UTx-IVF was presented as a solution, and did not accept the description of the problem given by the first discourse coalition. While stressing the importance of acknowledging the pain that may be associated with involuntary childlessness, the third coalition emphasized that the problem concerned more general questions regarding potentially eroding values and priority-setting within the context of Swedish health care.
As an example, it was suggested that “we” might want to might want to consider the drivers in research and how we allocate the skills and expertise of pioneering researchers. “I understand…” wrote a columnist
…that such ground-breaking research [as UTx-IVF] is exciting for the doctors who travel all over the world to talk about their results. But, we still need to be able to discuss whether some of the best doctors that we’ve got should devote themselves to such research when there are so many sick who need help. (Norrman 2015)
In a stronger way than merely contrasting UTx-IVF with surrogacy or adoption, the third coalition questioned the very focus on infertility in the other definitions of the problem given by the two other coalitions.Footnote 12 The problem in the third discourse coalition instead became a matter of how to handle a potential technological and moral imperative, i.e. whether all that can be done should be done, and why UTx-IVF was allowed in the first place (albeit within the limited scope of a research study). As an example, actors in this discourse coalition used metaphorical language in such questioning, one example of which is the description by medical ethicists of UTx-IVF as a case that seemed to illustrate a “moral compass that swings chaotically” in the “flux of a strong magnetic field” of desire to establish a new innovative medical technology (Johansson and Sahlin 2011). As other examples, the ethical debate about UTx-IVF was problematized through the contrasting effect of historical examples. This was the case when references were made to “dark chapters” in the history of science and medicine—such as the experiments conducted in the concentration camps during the Second World War, the Tuskegee study, and the Swedish “Vipeholm” caries experiment in which patients (among them children and adults with cognitive conditions) were given confectionery in a study conducted between 1945 and 1955, without consent being sought or given (see Bommenel 2006). There is a risk, one ethicist was quoted saying, that
…if we look back to too great an extent, and only point to the atrocities of the Nazis, we miss out on the challenges that we face ourselves. (Gunther 2015, p. 19)
As one example, an ethicists was also quoted saying, in relation to the UTx-IVF trial in Gothenburg:
In that case you have exposed a vulnerable group – women who very much want to have children – to a particularly experimental treatment. (Gunther 2015, p. 19)
In this manner, the third coalition underscored that something was off-track when it comes to the ethical considerations in the development of UTx-IVF (see also Borelius 2014). It may seem to be an ordinary medical development, but when investigated more carefully, the third coalition underlined, UTx-IVF is a clear example of the problem that a high-tech, high-profile medical innovation may dazzle us. Two further points were particularly noteworthy in this discourse coalition. First, concerns were raised about the power of narrative, and the way in which it determines whose needs are acknowledged. This was the case when actors contrasted the attention given to women with UFI, and the success stories of UTx-IVF, with the lack of attention to more mundane medical conditions. Actors in the third discourse coalition asked, for example, where the voices of people with dementia, another group that suffers, were in the public debate (Johansson and Sahlin 2011). That narratives of people with dementia rarely end up in the media spotlight, the same authors emphasised, does not mean that they are not suffering and may not have great or very great needs. Those voices should also be heard, but only some narratives, given by some people, make it into the public media (see also Hægerstam 2013). In contrast to the first coalition, which raised the concern that women with UFI are a group who has “suffered in silence”, the third coalition positioned the narratives of UFI as loud, and as being given space (or taking space). By raising concerns in this way that the power of some narratives is stronger than that of others, the third coalition suggested that infertility narratives drown out those of other vulnerable groups. The wish for UTx-IVF was thus—once again—positioned as extraordinary, but in this case in the sense that it may crowd out other health care needs.
Second, the third discourse coalition challenged previous and future investments in UTx-IVF. It engaged with the questions of how to set priorities, what should be included in the state-funded health care system, and why. One example is an article that mentioned that it had not been clarified what an UTx-IVF treatment (including IVF treatment, monitoring of pregnancy and caesarean section) costs, nor the costs of the extensive research project. The “first surgeries are allegedly [our emphasis] covered within the budget of the research project” (Haldesten 2012, p. 2), it was pointed out, which indicated uncertainty as to whether the costs of UTx-IVF development affect public health care after all.
In other instances it was indicated that UTx-IVF could not be completely disconnected from tax revenues and public health care, and should be seen as intrinsically associated with societal costs. In this way, one columnist (Norrman 2015, p. 17) noted that:
…staff and health care have been financed by a private funding body. But it will, of course, still generate costs for society.
These accounts of the costs associated with the development of UTx-IVF illustrated an uncertainty as to whether UTx-IVF competes with other treatments. Its funding scheme was here used to position the Swedish UTx-IVF development as an extraordinary case, that should be carefully considered when engaging with priority setting. Similarly, comparisons were drawn between what a certain amount of money could achieve in the clinic, when not used for UTx-IVF. Examples given included treatment for children with cancer or heart disease, and elderly people with dementia. When making financial assessments, it was argued, we must take into account not only the costs for a single transplantation, but also the total costs for developing the new technology (Johansson and Sahlin 2011).
The examples given above show how the third coalition urged that UTx-IVF be judged “like any other” treatment, and that we should take care that we are not lured by its spectacular framing and powerful narratives. The examples also tie into the more general issue of how priorities are to be set, and the core question raised by the third coalition: Should all that can be done be done? (Haldesten 2012). “I might be mocking and provocative”, wrote the medical editor-in-chief at Läkartidningen, and continued:
but I do believe it is valid to raise the question of whether all that can be done also should be done. It is the task of funders and of society to determine where the limited resources in research and health care are to be placed. There are many urgent areas, and not all of them are as spectacular and glamourous? (Östergren 2011, p. 4)
Likewise, concerns were raised whether all medical innovations should be covered by the general health care insurance. If we are to fund health care in solidarity, one columnist argued, it “…must be directed by need, not by demand, and everything that is possible may not be proper or reasonable. Especially not at the tax-payers’ expense” (Lann 2012, p. 2). While acknowledging that UTx-IVF is an interesting scientific advancement, this line of argument asserted that this does not necessarily imply that it should be introduced as a part of general healthcare. It was also argued that such an introduction would require an ethical analysis of the risks, benefits, needs and costs (Lynøe 2016).
The third discourse coalition challenged the selfevident acceptability of UTx-IVF as part of the Swedish health care system, explicitly and implicitly. In terms of ethics, this discourse coalition prescribed caution before investing in novel therapies such as UTx-IVF, and questioned the idea of a technological imperative. Calls for caution were also evoked about the risk of attending to that which can be perceived as new and exciting—rather than the more mundane everyday needs that cannot be as easily framed in this way. This coalition was concerned with whose voices were being listened to, and called for reflection on the possible drivers and motives behind certain medical research and priorities. Finally, concerns were also raised about the limits of medical innovation and how to set priorities in state-funded health care.
Critical reflection in the Ethics of the Societal Entrenchment-approach: what we see as ethical concerns, and why
We have above identified what gets to be the problems and solutions in the three discourse coalitions, in the Swedish debate over UTx-IVF. The introduction and practice of UTx-IVF as presented, discussed and argued for in the Swedish media are part of complex interactions in which actors present different problems, solutions, demands and needs for the technology. Some actors also present critical concerns and arguments against the acceptability of UTx-IVF at the experimental level, and as part of Swedish health care in the future. The societal entrenchment, in other words, is not smooth. Resistance and questions have been voiced.
The first step of the Ethics of the Societal Entrenchment-approach was to analyse how this has taken place, and the problems, solutions, alliances, desires, concerns and arguments involved. We now turn to the second step of our proposed approach, and address five aspects of these debates that we find to be troubling in the light of the results of our analysis.
First, we see the comparisons between UTx-IVF and surrogacy as problematic. The referrals made to surrogacy in the material analysed are often vague. It is not specified what kind of surrogacy arrangement is intended: commercial surrogacy or non-financially rewarding intrafamilial surrogacy. However, if UTx-IVF and surrogacy are to be compared, the relevant comparison—in the light of how UTx-IVF is performed in Sweden—seems to be between non-financially rewarding intrafamilial and friend-to-friend UTx-IVF and non-financially rewarding intrafamilial and friend-to-friend surrogacy arrangements. However, statements such as surrogates often being “taken from” “vulnerable” countries indicate that the surrogacy arrangement involved in the comparison with UTx-IVF, in such reasoning, is a commercial arrangement. If that is the case, it can, of course, still be argued that UTx-IVF is ethically preferable to commercial surrogacy. However, very few voices, if any, have argued that commercial surrogacy be allowed in Sweden. Comparing UTx-IVF with a form of surrogacy that commonly is critizised, and not with intrafamilial non-commercial surrogacy that some have argued for (SMER 2013), might enable certain kinds of conclusions - while leaving out some other ethically relevant comparisons.
Second, we find comparisons between hysterectomies—considered to be very common and unproblematic—and uterus donation to be troubling, as such comparisons fail to account for the knowledge gaps with respect to women’s experiences of hysterectomy in general (Gelder et al. 2005; Solbrække and Bondevik 2015; Williams and Clark 2000). Further, and even more importantly, the way in which analogies with hysterectomies framed UTx-IVF as “simply” a matter of using already well-known procedures and standardized techniques in contemporary medicine diverts attention away from the contingencies and complexities associated with the experience of not only removing but also donating one’s uterus to someone close to you. Such framings, we argue, are troubling as they tend to gloss over the donors’ lived experiences of donation, and the risks, concerns and difficulties associated with donating this body part. In a similar manner, we find the way in which statistics about the number of women affected by UFI are used to emphasise the need for UTx-IVF to be troubling. Equating the absence of a uterus with being involuntarily childless risks glossing over the fact that not all women with UFI desire UTx-IVF. This equation, we hold, is problematic, since it reinforces ideas about an unmet need for UTx-IVF and assumptions about women’s reproductive desires and the desire for a uterus although research into the perspectives of women with UFI is very scarce (see however Guntram 2018).
These first two aspects relate to a rhetorical staging that can render nuanced discussions difficult. Of course, the media might enact specific media dramaturgies, but for the ethical debate, we see this as unfortunate. Ethically relevant nuances risk being lost.
Third, in the light of Swedish health care being based on the idea of equal provision and access to health care (Government Offices of Sweden 2016), we find it troubling that certain subjects and concerns are not, or only occasionally, taken into consideration in the Swedish debate over UTx-IVF. Our analysis shows that male-to-female trans persons, who might desire a uterus as part of sex-confirming surgery (Alghrani 2018; Spillman and Sade 2018), are mentioned only occasionally (see Funcke 2009; Ny 2017; Tännsjö 2009). While there may be specific reasons to exclude UTx-IVF for trans persons from state-funded health care, the reasons for such exclusion must be discussed when a combination of technologies such as those involved in UTx-IVF is being developed.
Fourth, our analysis shows that the perspectives of donors and partners of women with UFI were rarely considered. The lack of such discussions makes clear the assumptions that the actors have made about who is exposed to the risks and benefits of UTx-IVF. While risks to those receiving the uteri through transplantation of course are central, the lack of discussion of possible implications on behalf of other persons—such as donors—can reinforce ideas about who is to be considered in the ethical debate over UTx-IVF. The exclusion of the voices of both some persons who might want to use UTx-IVF and those who might, implicitly, be assumed to not play as central a role in the latter parts of the execution of UTx-IVF (such as donors) can be understood in terms of power and inclusion: whose narrative gets to be heard in the public space? If the media wants to address ethics in a nuanced and careful way, such dimensions must be addressed. The absence of these voices in the debate is ethically troubling.
Fifth, and tying into the previous points, we find the recurring persistent lack of nuance with respect to various perspectives that engage with lived experiences of organ donation and assisted reproductive technologies to be ethically troubling. To fail to consider such experiences, from different perspectives, may centre the debate onto the claims for or against UTx-IVF, and there is a risk that ethical issues that only become apparent when engaging with such lived experiences and meaning-making are lost. For example, even though kidney donation is a standardized procedure, it can still be experienced in different ways, and not simply as “easy” (see, for example, Gunnarson 2016).