The importance of being pregnant: On the
healthcare need for uterus transplantation
Lars SandmanThe self-archived postprint version of this journal article is available at Linköping University Institutional Repository (DiVA):
http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-152391
N.B.: When citing this work, cite the original publication.
Sandman, L., (2018), The importance of being pregnant: On the healthcare need for uterus transplantation, Bioethics, 32(8), 519-526. https://doi.org/10.1111/bioe.12525
Original publication available at:
https://doi.org/10.1111/bioe.12525
Copyright: Wiley (24 months)
The Importance of Being Pregnant – On the
Health-1
Care Need for Uterus Transplantation
2
ABSTRACT 3
Researchers have recently provided proof of concept for uterus 4
transplantation, giving rise to a discussion about priority setting. This article 5
analyses whether absolute uterine factor infertility, the main indication for 6
uterus transplantation, gives rise to a health-care need and the extent to 7
which such a need places justified claims on public funding in a needs-8
based welfare system. It is argued that, regardless of the concept of health to 9
which one subscribes, there is a health-care need for uterus transplantation 10
in women with AUFI. The provision of alternative ways of addressing this, 11
such as surrogacy and adoption, reduces its severity. Hence, where such 12
alternatives are publicly funded, uterus transplantation is unlikely to become 13
cost-effective. However, where surrogacy and adoption are not publicly 14
funded, uterus transplantation should be given a similar priority level to 15
other assisted reproductive technologies. In these circumstances, public 16
funding for uterus transplants may well be justified, particularly in well-17
funded health-care system with relatively generous cost-effectiveness 18
thresholds. 19
20
BACKGROUND AND PROBLEM 21
The most recent successful development of assisted reproduction techniques 1
(ART) is uterus transplantation (UTx).1 Following a Swedish research 2
project, a majority of the seven women who received a transplant with a 3
uterus have given birth to one or two healthy children. Uterus 4
transplantation has raised much ethical discussion ranging from questions 5
surrounding the use of an extensive and potentially risky surgery and 6
immunosuppression for a quality-of-life benefit, via donor issues, to issues 7
about enhancement of men’s pregnancy capacity.2 The anticipated risks 8
involved with extensive surgery and immunosuppressive treatment have not 9
materialised, and except for minor rejection episodes and some problems 10
1 M. Brännström, et al. Livebirth after uterus transplantation. Lancet 2015;
385: 607-616.
2 K.S. Arora & V. Blake. Uterus Transplantation The Ethics of Moving the
Womb. Obstetrics and Gynecology 2015; 125: 971-974; A.L. Caplan, et al. Moving the womb. Hastings Center Report 2007; 37: 18-20; R. Catsanos, et al. THE ETHICS OF UTERUS TRANSPLANTATION. Bioethics 2013; 27: 65-73; S. Coleman. 2004. The Ethics of Artificial Uteruses. Implications
for Reproduction and Abortion. Aldershot, England: Ashgate Publishing
Limited; T.F. Murphy. Assisted Gestation and Transgender Women.
Bioethics 2015; 29: 389-397; R. Sparrow. Is it "Every Man's Right to Have
Babies If He Wants Them"? Male pregnancy and the limits of reproductive liberty. Kennedy Institute of Ethics Journal 2008; 18: 275-299.
with eclampsia, the project has provided proof of concept. Obviously, this 1
does not settle questions about risks if UTx were to be performed more 2
frequently and further research is needed. Still, this success has somewhat 3
transferred the focus of the ethical discussion from the internal ethical 4
problems and risks of UTx to the question of whether this should be 5
publicly funded in welfare-type health-care systems, such as the UK and 6
Sweden, given other health-care needs.3 This priority-setting issue is further 7
emphasised by the potential future developments in UTx, where it could 8
also be offered to men and transgender women.4 9
10
3 S. Wilkinson & N.J. Williams. Should uterus transplants be publicly
funded? Journal of Medical Ethics 2016; 42: 559-565; A. Alghrani. Yes, uterus transplants should be publicly funded! Journal of Medical Ethics 2016; 42: 566-567; J. Balayla. Public funding of uterine transplantation.
Journal of Medical Ethics 2016; 42: 568-569; M. Johansson & N.-E. Sahlin.
When technology goes astray. Lakartidningen 2011; 108: 1348; M. Lotz. Commentary on Nicola Williams and Stephen Wilkinson: ‘Should Uterus Transplants Be Publicly Funded?’. Journal of Medical Ethics 2016; 42: 570-571. At the time of writing this paper, research in Sweden is being carried out in parallel with a discussion on whether UTx should be publicly funded.
How to distribute scarce health care resources is a pressing issue in today’s 1
health-care systems, a situation that is likely to be exacerbated by continued 2
technological development, ageing populations and increased demands. 3
This calls for ethical analyses at different levels of abstraction and with 4
different perspectives, from the level of general distributive theories, via the 5
level of more radical systemic changes, to the level of actual decision-6
making given the current situation. The analysis in this article places itself 7
in the last category and has the rather modest aim of analysing the following 8
questions (focusing on the second one): 9
10
• Is there a health-care need for UTx in its current form? 11
• If so, how strong is its claim on scarce public resources? 12
13
What is meant by considering UTx in its current form? 14
15
First, the analysis only concerns UTx for people who were anatomically 16
female at birth. It does not therefore engage with questions about using 17
UTx to facilitate gestation in transgender women or in men since, at present, 18
UTx for these groups is not technically feasible. 19
20
Second the paper assumes a health-care system where: ARTs are publicly 21
funded to some extent (if not, UTx would seem to be a ‘no-brainer’ from a 22
priority-setting perspective); and it is not likely that their provision will be 23
re-assessed. This latter assumption does not imply that the analysis cannot 24
However, it is suggested that arguments prescribing radical shifts in policy 1
surrounding ART provision – which question people’s current preferences 2
as (in some way) ‘false consciousness’ – are not helpful for decision-makers 3
and will therefore have no real impact on the type of decisions in focus here. 4
Rather, such an approach, however important it is, will generally need a 5
change in social values, in turn requiring political change on a large scale 6
and over a long period of time. Following this, feminist critiques, arguing 7
that public funding of ARTs in general reproduces questionable socio-8
ideological conditions about biological parenthood and the evils of 9
infertility,5 will only be considered here as a form of side-constraint on the
10
type of arguments relevant to support funding for UTx. 11
Thirdly, there has been a fairly extensive discussion about reproductive 12
rights, including in relation to uterus transplantation.6 In this article I will 13
assume a health-care system based on health-care need rather than rights to 14
5 Lotz, op. cit. note 3.
6 D. Brock. 1994. Reproductive Freedom: Its Nature Bases and Limits. In
Health Care Ethics: Critical Issues for Health Professionals. D. Thomasma
& J. Monagle, eds. Gaithersburg, MD: Aspen Publishers; J. Robertson. 1994. Children of Choice: Freedom and the New Reproductive
Technologies. Princeton, NJ: Princeton University Press; Sparrow, op. cit.
health care, and where rights cannot trump other concerns in the system 1
when it comes to resources, like the Swedish system.7 2
3
Given its aim, the article will proceed as follows. First, I will present a brief 4
overview of relevant issues to consider from a priority-setting perspective. 5
Second, I will explore what is special about the condition requiring UTx. 6
Third, I will briefly analyse whether there is a legitimate health-care need 7
for UTx and establish that we have reason to accept that there is such a 8
legitimate need. Finally, the analysis in the remainder of the article will 9
focus on the degree of claim on public resources such a need can give rise to 10
in relation to alternative treatment or options. The article ends with a 11
summary of the main conclusions. 12
13
COMPONENTS OF A PRIORITY-SETTING PROBLEM 14
7To exemplify, in Sweden, the only positive reproductive (legal) right, it the
right to a publicly financed abortion up to week 18 (and under certain circumstances up to week 22). On top of this there are a number of negative reproductive rights allowing in vitro fertilisation (IVF), egg and sperm donation (but not embryo donation), IVF for single women, but not surrogacy etc. – but that does not imply that these should be publicly financed and these measures are rationed to some extent.
When analysing a technology from a priority-setting perspective a number 1
of important questions must be considered. First, is there a health-care need 2
for the technology? That there is a health-care need only shows that the 3
technology can be reimbursed, not that it will in fact be reimbursed. If it is 4
given a low priority, it might still not get funded. 5
6
Second, if there is a health-care need, there are a number of different factors 7
that will ultimately decide the degree of claim or priority of the technology. 8
Important factors in many health-care jurisdictions (including Sweden) are 9
the severity of the condition for which the technology is indicated, and the 10
effectiveness and cost-effectiveness of the technology.8 The effectiveness is 11
decided by the outcome of research on the technology. In this context I will 12
assume, following the Swedish research project, that UTx is an effective 13
treatment for the condition, absolute uterine factor infertility (AUFI).9 Since 14
the participants in the Swedish trial are carefully selected, future trials might 15
show lower effectiveness on a larger scale. Cost-effectiveness is obviously 16
dependent on the effectiveness of the technology, but I will provide some 17
8 B. Hofmann. Priority setting in health care: trends and models from
Scandinavian experiences. Medicine Health Care and Philosophy 2013; 16: 349-356.
general reflections on this in the article. Its focus will, however, be on the 1
severity of the condition, AUFI. 2
3
The severity of a condition is normally decided by features of the condition 4
like physical and psychological symptoms, effect on functional abilities, and 5
effect on mortality and can, for example, be assessed using the aspects of 6
international classification of functioning, disability and health (ICF).10 It is 7
also decided by available alternative technologies or treatments. Even if a 8
condition like diabetes type II is a severe condition when untreated, given 9
access to the best standard treatment, it is a highly manageable condition for 10
those patients who respond to treatment and it thus becomes less severe. If 11
patients have access to less than fully acceptable treatment, new treatments 12
can still be allocated based on for example cost-effectiveness – as is 13
exemplified by some new and highly expensive orphan drugs.11 14
15
CHARACTERISTICS OF AUFI 16
10 T.B. Ustun, et al. The International Classification of Functioning,
Disability and Health: a new tool for understanding disability and health.
Disabil Rehabil 2003; 25: 565-571.
11 S. Simoens. Pricing and reimbursement of orphan drugs: the need for
What are the characteristics of AUFI resulting in a potential need for UTx? 1
First, the woman lacks a biomedically functioning uterus by birth, disease, 2
or treatment of disease, e.g. cancer. This, however, may not result in a 3
determination of a health-care need if this biomedical problem does not 4
cause problematic symptoms or negatively affect the woman in other ways. 5
She must also have a preference for becoming pregnant and giving birth to a 6
child.12 This second feature is specific to AUFI or infertility problems in 7
general, although not uniquely so. Consider a 25-year-old in which a mortal 8
but treatable heart condition is detected at a regular health check-up. 9
Finding this heart condition is normally enough evidence for her having a 10
health-care need for treatment – we do not need to ask her if she has a 11
preference for continuing to live to make this a need. We will, of course, 12
have to ask her if she wants to go through with the treatment in order to 13
fulfil requirements of informed consent. However, the preference for 14
continued life associated with the health-care need is presumed in a way that 15
it is not for infertility problems. Whether or not this should be considered 16
12 It is possible to become pregnant and give birth to both genetically related
and non-genetically related children, but I will ignore that complication in this article and assume that the resulting child from UTx will be genetically related to one of the parties in the couple or to the single woman. Embryo donation might involve ethical problems in its own right, but will probably not affect the priority-setting issue to a large extent.
relevant to assessments of health-care need for UTx will be discussed in the 1
following section. 2
3
AUFI AS A HEALTH-CARE NEED 4
Wilkinson and Williams have provided a convincing argument that UTx is 5
the right kind of technology to be reimbursed in a health-care system of a 6
welfare type and have thereby implied that AUFI is a health-care need.13 7
However, given the observation about preference dependence above, let me 8
support this argument further by discussing AUFI through the lens of 9
different conceptions of health. Regardless of other features, if a condition 10
should be a health-care need it will have to be problematic along the right 11
dimension, i.e. along the objective of health care, that is, health. So is AUFI 12
a health problem? In the literature we find a number of different conceptions 13
of health, varying on a scale from more strict biostatistical or biomedical 14
models not taking subjective aspects into account (or only to a minimal 15
degree) to more holistic models where subjective aspects like preferences or 16
13 Coleman op. cit. note 2; L. Sandman. 2015. Ställer oss
livmodertransplantationer inför speciella prioriteringsproblem? In Patients,
Values, and Medicine: Hommage à Niels Lynøe. N. Juth & G. Helgesson,
experiences of well-being are essential.14 Since biomedical models are the 1
least favourable when it comes to taking preferences into account, if AUFI 2
passes the test for these, it should also pass the test for more holistic models. 3
The strict biomedical models focus on statistical normality in relation to 4
species functioning.15 Having a functioning uterus is statistically normal for
5
genetically female human beings (and, more generally mammals) of 6
reproductive age. Thus, AUFI would be considered a health problem on 7
biostatistical models which gives rise to a health-care need (see Daniels who 8
explicitly claims that infertility gives rise to health-care needs).16 9
10
For those women with a preference for becoming pregnant etc., this 11
biomedical problem also gives rise to suffering and/or thwarts desires 12
central to their life plans (common features of holistic theories).17 Empirical 13
14 C. Boorse. Health as a theoretical concept. Philosophy of Science 1977;
44: 542-573; N. Daniels. 1985. Just Health Care. Cambridge: Cambridge University Press; B. Brülde. On How to Define the Concept of Health: A Loose Comparative Approach. Medicine, Health Care and Philosophy: A
European Journal 2000; 3: 305-308; L. Nordenfelt. 1995. On the nature of health: An action-theoretic approach. Dordrecht: Kluwer.
15 Boorse op. cit. note 15, Daniels op. cit. note 15. 16 Daniels op. cit. note 15.
research indicates that if someone has a preference to have children and is 1
not able to conceive etc., this is highly stressful and has a great 2
psychological impact.18 Still, it is also questioned whether the preference or 3
desire to have children is ‘a sufficiently serious and weighty desire, such 4
that its thwarting would amount to a sufficiently serious and significant 5
harm or injury’.19 Let me return to this. However, whatever health 6
conception we choose, it seems AUFI can be a health problem giving rise to 7
a health-care need. It is of course important to emphasise that on no 8
conception of health do mere preferences for certain health-care 9
interventions amount to a health-care need. Still, the fact that AUFI gives 10
rise to preference-dependent needs does not disqualify potential treatments 11
for AUFI from entering the “contest” for public funding. Let me, however, 12
return to how it can still affect the claim on resources. 13
14 15
SEVERITY OF AUFI GIVEN ALTERNATIVES TO UTX 16
To assess the severity of AUFI, we next need to look at potential 17
alternatives to UTx. In this context I will look at the severity of the 18
woman’s situation and ignore that of a potential partner or the child. To 19
18 T.M. Cousineau & A.D. Domar. Psychological impact of infertility. Best
Practice & Research in Clinical Obstetrics & Gynaecology 2007; 21:
exclude the partner from this equation is probably quite uncontroversial; we 1
do not assess the severity of the situation of a patient with cancer as greater 2
just because he has a large family who are also affected by his condition and 3
will benefit if he gets treatment. The situation of the child is, of course, 4
more complicated, since he or she is affected in a much more direct way 5
than the partner as his or her existence is at stake. However, we do not have 6
any reasonable ways to assess the severity of not existing and the 7
corresponding benefit of coming into existence; hence, this will be ignored 8
in the following. 9
10
Distinguishing between different aspects of health-care need based on 11
AUFI, we find three basic components: 1) becoming pregnant, gestating and 12
giving birth to a child; 2) parenting a genetically related child; and 3) 13
parenting a child (even if one has not given birth to it and it is not 14
genetically related). Empirical research on why women1 (couples) want
15
UTx shows 1, 2 and 3 to be important, even if with 3 it is more a matter of 16
convenience than anything else.20 For 1 and 2 the only potential treatment is 17
20 Brännström, et al. op. cit. note 1; L. Guntram & K. Zeiler. 'You have all
those emotions inside that you cannot show because of what they will cause': Disclosing the absence of one's uterus and vagina. Social Science &
UTx, for 2 surrogacy is an alternative, and for 3 adoption and surrogacy are 1
alternatives.21 Let us start with the adoption alternative. 2
3
Severity of AUFI with adoption
4
Is adoption an alternative to UTx when competing for health-care 5
resources? Two contra arguments come immediately to mind. First, it is not 6
a health-care measure. Second, it is not generally financed (at least not in 7
full) by the welfare system. The fact that it is not a health-care measure 8
cannot in itself decide the issue. For example, in some cases we view self-9
care in terms of sleep, and keeping oneself hydrated as acceptable 10
alternatives to health care. In some cases we find that working through a 11
troublesome situation (like a period of grief) is a better option than health-12
care measures – like pharmaceuticals. In other cases, we import measures 13
that are not traditionally health-care measures into the health-care sector to 14
some extent, like conversational therapy. Hence, the fact that adoption is not 15
traditionally offered within the health-care system cannot settle the matter. 16
17
More problematic is that adoption is not publicly financed and given the 18
cost, not readily available to all in need of fertility treatment (according to 19
of women and men about biologic ties to children. Journal of Women’s
Health 1997; 6: 639-647.
the above). This cost will differ depending on country of origin but 1
normally includes, costs for handling communication and administration 2
both in their own country and in the country of origin, legal costs both in 3
their own country and in the country of origin, costs for health-care in the 4
country of origin, travel costs when collecting the child etc.22 In a
health-5
care system where formal equality is important, and this goes for most 6
welfare systems, if different people are similar in relevant aspects, they 7
should be treated equally.23 Hence, irrelevant differences like gender, age or 8
socioeconomic status should not affect access to treatment if people have 9
similar needs, or if there is similarly effective treatment for their needs. To 10
claim that the need for a UTx is reduced since adoption is available will 11
imply that we assume an alternative to affect the degree of need even if not 12
all patients have the opportunity or ability to actually benefit from it. Hence 13
to reduce the need for UTx, adoption needs to be publicly financed. 14
15
What if it were? We could imagine a system in which the welfare system 16
does indeed finance adoption. How would that affect determinations of need 17
22 Adoptionscentrum 2018. Landkostnad Kina. Available at:
https://www.adoptionscentrum.se/sv/Adoption/Landerna/Kina/Landkostnad/
23 L. Sandman & E. Gustavsson. The (Ir)relevance of Group Size in Health
Care Priority Setting: A Reply to Juth. Health Care Analysis 2016; 25:21-33.
for UTx? One problem could be that the woman has a preference for 1
pregnancy and a genetically related child, but not for becoming the parent of 2
an adopted child. It might be argued that if people have such preferences 3
they should be respected.24 However, in a needs-based rather than rights-4
based system, having a preference for a specific treatment or a specific 5
outcome is not necessarily taken into consideration in priority setting. 6
Patients will sometimes have to settle with the second or third best 7
alternative from their perspective given that other options are rationed. If the 8
second or third best option is not satisfactory for patients, they have the 9
opportunity to refuse care or to find care outside the publicly financed 10
system. 11
12
There is no reason why ARTs and their alternatives should be treated 13
differently. On the other hand, if an alternative treatment is not acceptable at 14
all or only affects the need marginally – even from a more objective 15
assessment – the claim on resources could increase. Is adoption 16
unacceptable from this objective perspective? A positive answer to this 17
question is difficult to substantiate. Parents who do not succeed in becoming 18
pregnant through ARTs and ‘settle’ for adoption seem to have a satisfactory 19
quality of life over time, even if this requires a period of grief and some 20
effort in renegotiating previous hopes and preferences.25 Still, in the end, it 1
seems that adoptive parents do alright. Indeed, in Bartholet it was even 2
concluded that research findings ‘reveal no significant disadvantages of 3
adoptive as opposed to biologic parenting, and some significant 4
advantages’26, and later research seems to confirm this.27
5 6
This requires a change or at least a different balancing of initial preferences. 7
Is the fact that this seems possible something that should affect our 8
assessment of severity? If a change in preferences will alter the health-care 9
need, even to the point of it disappearing, should that be taken into account 10
when assessing the claim on scarce resources of such a need? It is hard to 11
believe that changing preferences would have a long-lasting effect on strong 12
and problematic physical experiences of pain, nausea, dyspnoea etc. in a 13
way that will affect our quality of life. Maybe changing preferences could 14
have some impact on how we experience premature death, but obviously we 15
25 J.C. Daniluk & J. Hurtig-Mitchell. Themes of hope and healing: Infertile
couples' experiences of adoption. Journal of Counseling and Development 2003; 81: 389-399.
26 E. Bartholet. 1993. Family bonds: Adoption and the politics of parenting.
New York: Houghton Mifflin, p. 185.
27 R. Ceballo, et al. Gaining a child: Comparing the experiences of
will still die prematurely and thereby suffer a loss. That changing 1
preferences could have some impact on psychological suffering is 2
evidenced through cognitive behavioural therapy. Hence, in some cases of 3
established health-care needs, treatment implying or supporting (to some 4
extent) a change of preferences is an acceptable treatment. That changing 5
preferences can enable people with infertility problems to experience 6
adoption as resulting in acceptable levels of quality of life in comparison 7
with their original preference for giving birth and genetically related 8
children is also evidenced in research, as we saw in the previous section. 9
10
Where a need is preference-dependent in this way, and will become less 11
severe over time since preferences change or we learn to live with them, this 12
might affect how claims arising from it compete with other claims, 13
especially in times of austerity and rationing. Indeed, where two health care 14
needs are equally severe in terms of suffering and impact on quality of life 15
in the present, but where one will reduce over time or with an alternative 16
treatment and the other will remain constant, it seems we should prioritise 17
the second. 18
19
Hence, when a preference-dependent need like infertility competes with 20
other preference-independent needs of a similar degree and with access to 21
similarly effective and cost-effective treatment and there are not enough 22
resources to satisfy both needs, it is reasonable that the preference-23
dependent infertility need will have to give way. This might seldom be a 24
with patients with other preference-dependent needs. Still, what such 1
arguments purport to show is that adoption can be an alternative that 2
reduces the need for a UTx in the case of AUFI. This does not imply that 3
there cannot be a residual need related to pregnancy and giving birth to a 4
genetically related child. This need will then be relatively smaller, which in 5
turn should reflect on what degree of cost-effectiveness is needed to 6
motivate the extra resource use. Hence, if the greater part of AUFI could be 7
satisfied with adoption, adoption is then likely to be the more cost-effective 8
alternative – remembering that adoption (in Sweden) costs in the range of 9
EUR 10,000-20,000 and UTx costs in the range of EUR 60,000-80,000.28
10 11
Yet, as noted previously, this reasoning is only valid if adoption is available 12
through public financing. This, however, is not generally the case in the 13
healthcare systems where UTx is approaching clinical application such as 14
the Swedish system. Given this, attention will now be turned to the 15
alternative of surrogacy. 16
17
Severity of AUFI given access to surrogacy
18
If the availability of surrogacy is to affect the priority accorded to AUFI, it 19
would, as in the case of adoption above, need to be publicly financed. There 20
28 Personal communication from Mats Brännström, the principal
are, however, obviously potential ethical problems with surrogacy.29 These 1
might cause a health-care system or society to decide to refrain from 2
publicly financing surrogacy. At the moment this is the official attitude of 3
Swedish society.30 Still, where a society decides to offer surrogacy within 4
the publicly financed health-care system, we assume that they have arrived 5
at the conclusion that such ethical concerns could be handled satisfactorily. 6
Hence, in what follows, these problems will be ignored. 7
8
With surrogacy, a woman with AUFI can become the parent of a genetically 9
related child, but will lose out on the experience of being pregnant and 10
giving birth. In a situation when only surrogacy is available as an alternative 11
(and not adoption), we might go even further in reducing severity than with 12
adoption. For some prospective parents, there is a certain resistance towards 13
adopting a child, which might reflect on the ability to come to terms with 14
adoption. Likewise, some may also hold a strong preference for genetic 15
relatedness. Research indicates that this is more important for men than 16
29 R. Ber. Ethical issues in gestational surrogacy. Theoretical Medicine and
Bioethics 2000; 21: 153-169.
30 Statens offentliga utredningar (SOU) 2016. Olika vägar till föräldraskap.
women.31 However, for those women who strongly desire to parent a 1
genetically related child, surrogacy is likely to reduce the severity of the 2
healthcare needs arising from AUFI even further than adoption and thereby 3
place even higher cost-effectiveness demands on UTx to balance the 4
residual severity. Comparing surrogacy and UTx, surrogacy is the more cost 5
effective option especially where calculations of cost are based on that of 6
altruistic rather than paid surrogacy. Indeed, in many countries, altruistic 7
surrogacy would be the only acceptable option given legislative restrictions 8
on compensation for surrogates. UTx involves a set of costly procedures, 9
including but going beyond the procedures needed in cases of surrogacy. 10
11
If both surrogacy and adoption are publicly financed, the priority between 12
these two alternatives to UTx is more difficult to assess and I will leave this 13
issue with a short comment: Given the fact that adoptive parents seem to 14
come to terms with not having a genetically related child over time, from a 15
long term perspective, the differences in severity might be fairly small. If 16
so, it will all come down to differences in cost and thereby cost-17
effectiveness. 18
19
31 J. McCandless & S. Sheldon. 2014. Genetically challenged: the
determination of legal parenthood in assisted reproduction. In Relatedness
COULD THE RESIDUAL SEVERITY OF AUFI GIVE RISE TO 1
CLAIMS ON PUBLIC RESOURCES? 2
3
While the priority accorded to AUFI, and thereby the need for UTx, may be 4
reduced by access to surrogacy and adoption, it could still be important 5
enough to motivate public financing of UTx. Given this, let us finally take a 6
look at that situation. This requires exploring the additional severity related 7
to conceiving, being pregnant and giving birth to a child (gestating for 8
short) in addition to that accorded to the desire to parent a child but not 9
being able to due to medical reasons. Note that this does not require us to 10
look at the severity of not being able to gestate in isolation from parenting a 11
child. In this context I will assume that we are only considering a situation 12
in which the need for UTx is related to the total need for gestating and 13
parenting a child. However, since the parenting of a child can be satisfied by 14
adoption or surrogacy, the ‘remaining’ severity for UTx is related to the 15
period of gestation.32 16
32 We could imagine a situation in which someone with AUFI wants a UTx
only to gestate but then plans to give up child for adoption, only to experience the gestational period. It is unlikely we would find the risk-balance in such a situation reasonable given the risks of UTx. Likewise, the consequences of bringing a child into the world, with no intention of taking care of this child and without this being part of a surrogacy arrangement, is
1
So, what is involved in not being able to gestate? The following quotation 2
from Wilkinson and Williams gives us an idea: 3
4
First… the experience of pregnancy and childbirth is something to 5
which many women attach tremendously high value and is often 6
thought to facilitate ‘bonding’ with one’s child. Second, some 7
philosophers have argued that gestation is as important as, or more 8
important than, genetic or social ties when it comes to establishing 9
maternal status and maternal moral claims over the child [...].33
10 11
In this quotation, we find different relevant considerations: personal 12
experiences of the woman during gestation and childbirth, effects on the 13
relationship with the child (and maybe also more direct effects on the 14
child’s future well-being), and effects on the status of the woman as a 15
mother in relation to the child. 16
17
unlikely to be acceptable from a utilitarian perspective – given the evidence that the first period of a child’s life can have an essential impact on his or her later well-being (REF). I owe these observations to an anonymous reviewer.
First, an observation in passing. When surrogacy is the alternative to UTx, 1
there will always be a woman who has the first set of experiences (either the 2
prospective social mother or the surrogate mother). The surrogate mother 3
might also have a preference for gestating, expressed in the quotations 4
above, which might be a crucial reason for wanting to be a surrogate 5
mother. So even if we do not accept this as a health-care need with claims 6
on resources in isolation, someone will potentially have the benefits 7
associated with gestation. 8
9
Let us start with this first set of experiences. Being unable to experience 10
gestation and the positive experiences associated with this seems to be a 11
comparatively small loss in relation to other health-care needs. That is, it is 12
difficult to see that such a loss would have a significant and long-lasting 13
effect on the health or health-related quality of life of the woman. 14
Comparing the quality of different lives, we can accept that such 15
experiences can add to a life, without drawing the conclusion that a life 16
lacking these experiences would necessarily be worse than a life with them 17
– only differently good (cf. the lives of fathers, or non-gestating partners, 18
adopting mothers etc.). We need to remind ourselves that such a condition 19
will have to compete on the severity scale with conditions that are highly 20
symptomatic, debilitating, with great social impact and with reduced life-21
expectancy, like malignancies, chronic physical and psychiatric diseases, 22
life-long functional disabilities etc. 23
What about the effects on the maternal status of the woman? Rothman 1
makes a case for this in her book Recreating Motherhood: ideology and 2
technology in a patriarchal society, and this is based in turn on the
3
establishment of a relational bond between the gestating woman and the 4
fetus/child.34 Maternal status brings moral claims over the child, implying
5
both a prima facie moral right to parent the child and prima facie moral 6
obligations to parent the child. It is important to note that establishing the 7
relational bond during gestation is not a necessary condition for acquiring 8
maternal status. Rothman acknowledges that the non-gestating woman or 9
social parent adopting a child could also acquire maternal status (through 10
the relationship then established with the child). However, the relational 11
bond in gestation would seem to be sufficient to establish maternal status. 12
That is, if a woman gestates a child and during this period establishes a 13
relational bond, she will have acquired maternal status towards the child 14
(regardless of genetics or legal arrangements etc. for the future social 15
parenting of the child).35 16
34 B.K. Rothman. 1989. Recreating Motherhood: ideology and technology
in a patriarchal society. New York: Norton.
35 As is observed in the article by Wilkinson and Williams op. cit. note 3,
the legal system in the UK (and in Sweden and other countries) does privilege gestation as grounds for legal motherhood and thereby seems to support this view on rights and obligations. However, I will leave legal
1
Accepting Rothman’s view would lend support for UTx over surrogacy for 2
pragmatic reasons. In order not to complicate the issue of who has maternal 3
status and moral claims/obligations towards the child, UTx should be 4
preferred over surrogacy. However, should we accept Rothman’s view on 5
maternal status? And even if we do, does this provide us with a reason for a 6
claim on public resources? Following Rothman, there is a rather complex 7
relationship between maternal status, claims and obligations. It seems as if 8
the claims arise merely from being the gestating woman, whilst obligations 9
arise from establishing a relationship with the child. Hence in cases of 10
abortion, the gestating woman has the right to decide on an abortion, based 11
on her moral claim, but can avoid entering into a relationship in order not to 12
break any obligations towards the child. Still, there is also choice when it 13
comes to claims, since a woman can relinquish her claims and transfer them 14
to another woman. As such, if we have ‘harmonious’ surrogacy 15
arrangements where all parties agree on their respective roles, it seems that 16
maternal status can be clarified. From a moral psychology perspective, there 17
might be some ‘residue’ of this maternal status, however that is then a 18
problem for the surrogate mother and not for the genetically related mother 19
– unless this results in the surrogate mother trying to regain her maternal 20
status. This latter aspect should not be underestimated when assessing 21
whether it is reasonable to accept surrogacy and when setting up an 22
acceptable praxis of surrogacy. Still, as indicated above, when it comes to 23
parental status and the moral rights and obligations associated with this, 24
obligations. We do find it reasonable that men (or the non-gestating parent 1
in a relationship) can acquire parental status with the ensuing claims and 2
obligations. Hence, this does not seem to be a weighty reason to accept a 3
strong claim on resources. 4
5
What if the lack of gestation etc. influences the relationship with the child or 6
in other ways affects the future well-being of the child? This is an empirical 7
question, and since UTx is a new technology we cannot compare how 8
children born from UTx compare with children born from surrogacy (or 9
being adopted) fare on this account. Do we have reasons to expect such 10
effects? First, the partners of gestating women seem to be able to develop 11
perfectly satisfactory relationships with their children, regardless of 12
gestation. These relationships might be different from the relationship with 13
the gestating woman, but it seems farfetched and unwarranted to claim that 14
they are worse (whether from the perspective of the child or the partner). 15
Could there be other problematic effects on the well-being of the child? 16
Recent studies indicate that there are some problems for children born 17
through surrogacy in relation to children born through ‘natural’ conception 18
or through ARTs, implying gestation by the social mother, in terms of 19
adjustment problems for the child but not when it comes to paternal quality 20
or experiences.36 However, while authors draw the conclusion that the 1
absence of gestation might be more problematic than the absence of genetic 2
ties, they emphasise that the child’s problem is within the normal range and 3
does not constitute a psychological disorder. Thus, such problems do not 4
seem to be severe and therefore do not give rise to strong claims on 5
resources. Another aspect of the future well-being of the child could be that 6
the gestating mother would have better control over her lifestyle, and may 7
prove more eager to manage her lifestyle in a way beneficial to the child if 8
she will also be the parenting mother. This is of course speculative. I have 9
not found any empirical support for surrogate mothers engaging in more 10
problematic life-styles, involving risks for the future child, than pregnant 11
women in general. Given that surrogate mothers also experience the 12
establishment of a relationship to the child, they will also have a sense of 13
responsibility for the child. 14
15
So, what do we have here? We have a set of experiences for gestating 16
women that would definitely add to the women’s lives, but the lack of 17
which cannot, when compared to other needs in the healthcare sector, be 18
viewed as seriously affecting the women. We have an idea about acquiring 19
maternal status that does not provide us with the necessary criteria and for 20
36 S. Golombok, et al. Children born through reproductive donation: a
which there are alternative routes. We have some empirical effects on the 1
child that potentially might be paralleled when comparing surrogacy and 2
UTx, but which are not documented to be of a very serious character. 3
4
To sum up, there are documented preferences for the conception, gestation 5
and birth of the child later to be parented, based on AUFI, a medical 6
condition. These preferences can, at least to some extent, be related to 7
different aspects of health or health-related quality of life. If there is access 8
to surrogacy within the health-care system in question, the residual need 9
will be the need for gestation. It is only a reasonable health-care need giving 10
rise to claims on resources in combination with the ambition to parent the 11
resulting child. Assessing the importance of this need, or in other words, the 12
severity of this condition in terms of what is lacking unless it is fulfilled by 13
having access to surrogacy or adoption, I draw the conclusion that the 14
severity is relatively small. What could increase the severity would be if 15
empirical evidence were to show that surrogacy influences the well-being of 16
children negatively to a substantially greater degree than UTx. 17
18
A FINAL NOTE ON COST-EFFECTIVENESS 19
20
Interventions for health-care needs with low severity may still be 21
reimbursed in an well-funded health-care system if they turn out to be 22
highly effective. So does UTx have the potential to be highly cost-23
effective when compared to alternatives? There are, to date, no proper cost-24
effectiveness analyses of infertility treatments generally face some 1
methodological challenges.37 But let us carry out some reverse calculations. 2
3
We will start with the situation where UTx has no alternatives and thus 4
AUFI’s severity cannot be reduced by alternative measures. The cost of 5
UTx has been assessed to be around EUR 60,000-80,000.38 In Sweden, 6
there are no official acceptance thresholds for cost-effectiveness, but health-7
care needs at the lower end of severity have a high probability of getting 8
funded if the cost per QALY does not exceed EUR 50,000.39 Hence, to be 9
considered cost-effective, UTx must produce more than 1.2-1.6 QALYs. In 10
NICE’s clinical guidelines we find that both the decrement in quality of life 11
associated with involuntary infertility, and the QALY gain from having a 12
children through infertility treatment is estimated at 0.07.40 If successful, 13
37 NICE. 2013. Fertility: Assessment and Treatment for People with Fertility
Problems. In NICE Clinical Guidelines. National Collaborating Centre for Women’s and Children’s Health (UK).
38 Personal communication from Mats Brännström, principal investigator of
the Sahlgrenska project.
39 M. Svensson, et al. Reimbursement Decisions for Pharmaceuticals in
Sweden: The Impact of Disease Severity and Cost Effectiveness.
Pharmacoeconomics 2015; 33: 1229-1236.
UTx would achieve the needed amount of QALYs in about 17-23 years. In 1
previous cost-effectiveness analyses of infertility treatment, a 20-year time 2
span without discounting and only counting the effects on the woman has 3
been used and is accepted by guidelines.41 As such, it does not seem 4
impossible that UTx with no available alternatives could be found to be 5
cost-effective given the current guidelines, the current cost, and the 6
acceptance of Sweden’s (fairly high) threshold. 7
8
On the other hand, if women with AUFI have access to publicly financed 9
surrogacy (or adoption, which we might assume is in the same cost- range), 10
the situation changes. It is assumed that altruistic surrogacy arrangements 11
might cost somewhere up to EUR 20,000 according to data from the UK, 12
which leaves a difference in cost in relation to UTx in the range of 13
EUR 40,000-60,000.42 To stay below EUR 50,000/QALY, UTx will now 14
have to produce an incremental extra 0.8-1.2 QALYs in relation to the gain 15
from surrogacy (or adoption). This incremental QALY gain will have to be 16
attributed to the extra gain of being able to conceive, gestate and give birth 17
(and the consequences thereof). If we take the time span of 20 years without 18
discounting accepted in NICE guidelines, there needs to be a quality of life 19
gain in the order of 0.04-0.06. This would imply that almost half of the gain 20
41 Ibid. Here it is also assumed that the decrement of quality of life will not
in quality of life from becoming the parent of a child is lost with surrogacy 1
in comparison with infertility treatment, which does not correspond well 2
with the studies concerning quality of life for surrogate (or adoptive) parents 3
referred to previously. If we were to be even more generous and allow this 4
needed gain to be distributed over 50 years (assuming that women will start 5
to benefit in their thirties and then continue to benefit into their eighties), 6
there needs to be a quality of life gain in the order of 0.016-0.024. Even 7
with this extremely generous time span, a substantial part of the quality of 8
life gain (from 1/5 to 1/3) should be attributed to the pregnancy part, which, 9
once again, does not correspond well with studies of surrogacy or adoption 10
parents. Hence, given the current situation and assumptions, it seems 11
unrealistic that the extra gain of UTx in relation to alternatives would prove 12
cost-effective. 13
14
Obviously, this is not a full cost-effectiveness analysis of UTx in relation to 15
surrogacy and adoption, and there is much discussion about the 16
methodology of cost-effectiveness analyses where different assumptions 17
would change the equation.43 It only shows that for UTx to become cost-18
effective given access to other alternatives might be a challenge, a suspicion 19
that Stephen Coleman had already voiced in 2004 when discussing this form 20
of technological development.44 It is important to note that this assessment 21
might change following a reduction in cost for UTx due to technical 1
advances (e.g. robotic surgery). Similar changes in costs for adoption and 2
surrogacy are not to be expected and might therefore change the relative 3
cost-effectiveness ratio between these options. 4
Summary and conclusions 5
In this article, I have explored the health-care need for UTx in current 6
needs-based welfare systems. In line with other authors, I have shown that 7
AUFI results in a health-care need, where the priority of this need will be 8
decided by considerations such as the severity of AUFI, the effectiveness of 9
different alternatives to satisfy this need and the cost-effectiveness of these 10
alternatives. 11
12
The strength of the claim on public resources for funding UTx will depend 13
on available alternatives. UTx will have the strongest claim if surrogacy and 14
adoption are not publicly funded (which is the case in Sweden), with the 15
only difference in relation to already funded ARTs being cost-effectiveness, 16
which might give it a lower priority. If, on the other hand, patients with 17
AUFI have access to publicly funded adoption or surrogacy, the claim will 18
be radically smaller, given the lower severity and worse cost-effectiveness. 19
