This Progress Educational Trust event discusses whether – and in what circumstances – single people should be able to access publicly funded fertility treatment. More details in the full description below. ↓↓↓
This event was held at the Royal College of Physicians of Edinburgh on 10 January 2024, and was produced by the Progress Educational Trust in partnership with the @scottishgovernment. See their websites at https://www.progress.org.uk/ and https://www.gov.scot/
INTRODUCTION
• 0:00:00 – Sarah Norcross (Director, Progress Educational Trust)
PRESENTATIONS
• 0:01:13 – Dr Sarah Martins da Silva (Clinical Lead for Fertility Services, NHS Tayside)
• 0:11:55 – Dr Alan Brown (Senior Lecturer in Private Law, University of Glasgow)
• 0:22:40 – Dr Catherine Jones (Lecturer, King’s College London)
• 0:33:06 – Professor Guido Pennings (Emeritus Professor of Ethics and Bioethics, Ghent University)
DISCUSSION
• 0:43:30 – Responses to questions and comments
AUDIENCE CONTRIBUTIONS
• 0:44:36 – Professor Adam Balen (Consultant, Leeds Centre for Reproductive Medicine)
• 0:49:56 – Professor Jacky Boivin (Professor of Health Psychology, Cardiff University)
• 0:55:04 – Stuart Lavery (Divisional Clinical Director of Women’s Health, University College London Hospitals)
• 0:58:08 – Joanne Leitch (Lead Scientist, Fertility Scotland)
This film of the event was made by Video Production Edinburgh. See its website at https://videoproductionedinburgh.co.uk/
So tonight we’re discussing fertility treatment for single people who should pay it includes questions such as if the state were to fund this then what if any access criteria should be put in place should the access criteria be the same as for heterosexual couples samex couples um if we want to approve
Equality in access to fertility treatment can we do this without introducing new inequities because you know we want to do something good not create a whole load more problems down the track now to tackle these issues we’ve got a fantastic lineup for you this evening we have Sarah Martins to Silva Alan Brown
Katherine Jones and gido pennings so our first Speaker this evening is Dr Sarah Martins D Silva Sarah is the clinical lead for fertility services at NHS tside and a consultant um obstetrician and gynecologist at ninew hospitals assisted conception unit she’s also clinical reader in Reproductive Medicine at the
University of Dundee and much more so this is the question and uh that we’re going to try and Tackle this evening and as Sarah says I’m a clinical reader in Reproductive Medicine which means that I do research with the University of Dundee but I’m also a consultant gynecologist at nine worlds assisted
Conception unit and I’m very proud proud to be part of an organization the NHS that provides Health Care free at the point of care and the care that is provided is impartial and non-judgmental so if you are a lifelong smoker and you develop lung cancer and require surgery
To reect that then the NHS will do that for you at the cost of about 8 and a 12,000 if you are overweight unfit hypertensive and develop chest pain and unstable angina and need a stent for your heart then the NHS will do that for £95,000 if you’re unfortunate enough to
Slip over on the cobbles of Ender in the ice and snow and break your ankle that requires surgical fixation then uh you can have that done by the NHS for somewhere between 4 and a half and 8 half th000 but I think the point I’m trying
To make here is that I think the NHS is not really valued by any of us and I think think even the clinicians that work within the NHS don’t truly understand the cost required to deliver Health Care Now the second part of NHS Healthcare or Healthcare delivery is the
Fact that across the UK it is evidence-based delivery of treatments and interventions and what that means really is that the evidence that’s there is synthesized by a number of different uh organizations but U one that Springs to mind is the nice so the National Institute for clinical excellence and
What they do is they look at all the evidence that guides then how we deliver treatment What treatments are used and they look at how the best treatments work but also the cost Effectiveness for that and in fertility treatment that’s slightly different because access is apparently restricted much more
Obviously in any other form of of of delivery of Health Care some of those eligibility criteria that we work within are informed by nice and uh you will be well aware of of of the reasons behind that but mainly because we want to deliver effective fertility treatment uh and and costeffective fertility
Treatment so if you are a couple and your female partner is under the age of 40 nice guidelines would say that you need three Cycles or up to three cycles of IVF if you’re between 4 uh1 and 43 years of age then you can have one cycle of NHS funded
Treatment and there are other access CR criteria both Partners need to be non-smokers no methodone no illicit drugs uh if you have been through a series of Investigations and no apparent cause for your infertility then the recommendation is to be trying for a pregnancy for two years before moving on
To IVF that would be funded a female has to have a reasonably healthy BMI between 8 and a half and 30 and these really are influenced these these choice of criteria influenced by whether treatment will work but also about the desire for healthy pregnancy and a healthy mom and
Baby at the end of that but if you’ve had a child already if you between you or or biological parents or legal parents as a couple then there is no treatment for you on the NHS I think it is really important to deliver fertility treatment I think you
Would expect me as a clinician working in this sector that I’m going to believe and and thoroughly believe in what I do it is part of our fundamental human right to be able able to assist couples and individuals to fund a to found a family but there’s also a great
Appreciation of the huge and wide reaching effects of infertility it’s a very challenging condition that has both psychological and physical uh effects and in a recent fertility Network UK survey uh asking couples that were going through treatment and experiencing infertility up to 83% of them said they
Felt sad frustrated or worried often or all of the time nearly half of them experience depression and one in 10 experience suicidal feelings often or all the time these are horrific experiences that our couples go through and we are those of us that work within the fertility sector also aware of the
Collateral damage that infertility causes on on stress on strain on relationships on finances on Career progression as well as the global impact and social consequences for women who are unable to Bear children the issue the first issue I want to highlight then is although in Scotland
We are very lucky we are funded well and we follow the nice guidelines that is not the experience of couples across the UK there are many people in England and Wales and Beyond where they do not get the three cycles that the nice guidelines would suggest that they
Should access and I think one of my real challenges here about you know extending and and and and looking at who’s going to fund treatment for single people is well hang on a second there’s whole heap of couples that aren’t even getting the treatment that they need and
Deserve but the reality is if you are single there is no NHS funding for the moment and these are the costs that you might expect to encounter from our local private facility uh clinic so for a cycle of donor insemination you’re looking at something like two and a half
Th000 IVF using donor sperm upwards of 77,000 donor eggs anywhere between 6 and2 to over 92,000 and surrogacy prices on inquiry only so there’s a big question here isn’t it that we’re trying to address of who should pay and as logistically simplistically that comes down to is the
NHS going to fund this or are we going to expect single people to pay for their own treatment and one of the questions I guess that I’m really struggling is why on Earth is fertility treatment for a single person any different to treating a couple there’s many couples of all
Kinds of Arrangements might need Don and so on we treat them why on Earth wouldn’t you treat a single person and then there’s a part of me that sort of stands back from this and saying we’re a National Health Service and actually is being single a medical
Condition I don’t know whether I’ve got the answers but anyway let’s carry on so there’s some fundamental biology here clearly if you are a a wanting a baby then we need an egg and we need some sperm or a sperm to create an embryo that there needs to be placed Within a
Uterus and that person then carries the pregnancy to deliver hopefully aive baby so fundamentally if you’re an individual single person that produces eggs then you’re going to need donor sperm for that equation uh assuming you have a uterus and if you’re a single person producing sperm then you’re going to
Need Donut eggs as well as a surrogate to carry that pregnancy and I guess surrogacy is a quite complicated Topic in and of its own right but thinking then about well okay look it’s relatively simp why don’t we just focus on treating single women that would be a
Place to start appreciate what Sarah is saying about inequalities but actually there’s a slightly more difficult problem here in that even the Scottish government the politicians the uh police can’t quite decide in Scotland what is a woman uh you see the picture of Isa Bryson there and the prison stories that
Came out earlier this year but we live an increasingly diverse and and exciting Community where people may identify from a a different sex to though that the biological uh gamut or or whatever that they bring to the equation and that makes this much much more complicated but there’s also a much bigger thing
About why would you treat one sex and not the other you know that’s fundamentally wrong in my mind so you need donor gamuts or donor egg or donor sperm to make a baby if you’re going to treat somebody that’s single donor recruitment requires amazing people that are prepared to
Donate their eggs or their sperm but it also requires a huge and phenomenal amount of investment clinical investment it requires multiple appointments and a significant investment of time and energy from an initial kind of Health questionnaire return you need to have somebody that has a good ovarian reserve a
Nice qual quantity of eggs or has got good sperm better than normal sperm that can freeze and thw well there are also various genetics tests that need to be completed and other infectious diseases screening and all of these tests are time sensitive and need to be repeated
At intervals so there’s a huge amount of investment that needs to happen to recruit donors and there’s less than at the end of that pathway uh three to four out of a 100 potential donors would be recruited um following that pathway so there’s a significant issue with donor
Supply and demand our eligible patients are already poorly supp supplied and and therefore we need either significant additional NHS investment or money to import Donut eggs and sperm from elsewhere so then lastly then what is infertility and there’s some definitions that I’ve put up on the slide here one
From The Who and one from the NHS both of which have a nod to the fact that to be diagnosed with infertility is a medical condition there’s a couple trying for a pregnancy more recently the American Society of Reproductive Medicine has released this committee opinion which I think probably is much
More in keeping with today’s world and what they say here is that intervention should be not limited to the use of Donut eggs sperm or embryos so lastly demand for fertility service are potentially limited but our NHS resources are not we already have a waiting time we have complaints about
How long people wait for treatment and people who need donor eggs or sperm already wait a long time so we hugely need more investment for donor programs and so on but just because something’s difficult or needs money it doesn’t mean that we shouldn’t do it the NHS should
Be accessible to all young single people have a really good prognosis for fertility and we shouldn’t be excluding them by calling them single and not treating them our next speaker this evening is Dr Alan Brown Allan is a senior lecturer in private law at the University of Glasgow School of Law he’s
Author of the book what is the family of law the influence of the nuclear family I’m not actually convinced that this is a problem where the law itself self offers us many answers and many solutions um and so I want to explain why I think that is why why I think that
While this is an interesting question and while there are of course legal Dimensions to it it might be one where law is not the answer okay so the first thing I want to talk about is the legislative framework for fertility treatment in the UK and how that relates to the question of
Funded NH T fertility treatment for single people and I suppose actually how how it doesn’t relate to the to the funding really is is my point so just a very sort of basic um boring legal Point human fertilization and embryology act 1990 was the the the the starting point for our legislation of
Fertility treatment that was updated by the human fertilization and embryology act 2008 the 1990 Acts Still Remains and and much of the the fertility landscape is still regulated by the 1990 act both of these pieces of legislation are UK wide so they apply to Scotland England Wales and Northern Ireland however
Healthc care is devolved so the NHS is devolved to each of the legislatures the parliaments the assemblies at least when the Northern Ireland one is sitting H in Scotland Wales Northern Ireland as well as that in England NHS is structured in such a way that decisions about health
Treatment are devolved in a further way to local trusts um so we have a a framework here where we have a legislative framework about fertility but we also have a sort of range of devolved Frameworks for healthcare okay what that means obviously is that there are differences
Between how the NHS operates in Scotland Wales Northern Ireland and England and within different regions in England and that is obviously true regardless of what sort of medical treatment we are talking about there are there are differences not in the context of fertility there are differences in any
Context and we accept this within the legal framework that regulates the NHS this is just a basic um part of of how our Health Service works so the statutary framework relating to fertility allows fertility treatment for single people people both single women and H single men in the
Case of surrogacy so there’s no Prohibition in the human fertilization embryology legislation on single people accessing treatment this is especially true since the 2008 act changed some of the statutary language so the 1990 act con contained a condition um that when um clinics with licenses in the UK were
Considering treatment they needed to consider the need of a that child for a father so there was a provision that explicitly said that that was interpreted by some as um calling into question whether single women would actually in every case be allowed to access treatment however that
Was removed by the 2008 act what the the act now refers to is the need for the child to have supportive parenting so there’s no there’s no legal prohibition there however there’s no distinction in this legislation between public and private treatment what the human fertilization embryology legislation is
Concerned with is what sorts of treatment can licensed fertility clinics in the UK provide that’s it the fertility regulator the human fertilization embryology Authority also does not have any regulatory powers in relation to the funding of treatment the funding of treatment is a question for the NHS it’s a question for the health
Boards or in in the case of Scotland or Wales the the national in that sense Health Service so as s said in her talk before there are differences in in how fertility treatment is accessed across the UK okay so it’s accepted within law H that decisions made by Health boards are sub
To judicial review so there is the possibility for individuals to challenge these decisions about funding um and you’ll notice that my title on the first side said private law so I am talking about judicial review here which is public law so if I get anything wrong I apologize to the public lawyers but
Broadly speaking in a judicial review you would challenge a decision on the ground that it was irrational illegal or that it violated certain aspects of the human rights regime um it’s very very difficult in this context I think to envisage a situation in which a court would believe a decision of a Health
Board was irrational given that these decisions are based on um documentation relating to clinical criteria that will be um set out and referred to there I don’t think there’s any illegality challenge because there’s an established legal regime which means I think that the context where we might have some
Legal involvement is on the human rights grounds so that is what I want to talk about now I want to talk about the uh whether the human rights regime offers a potential solution to the lack of access to funded treatment so it’s been understood by the European
Court of human rights in Strasburg that the European convention on human rights contains a right to reproductive autonomy and that comes from a combination of article eight which is the right to private and family life article 12 which is the right to marry and found a family and article 14 which
Is the right not to be discriminated against in the exercise of your other rights under the convention but this does not necessarily include any positive obligation on constr Contracting states to the ECR so in in the uh human rights context in the European human rights context I should
Say there are positive obligations and there are negative obligations negative obligations are states obligations not to interfere with people’s rights positive obligations are states have to do certain things to give effect to rights so in the context of reproductive autonomy what there is is an obligation on States not to
Interfere with reproductive autonomy so you can see here how if a state had a Prohibition on single people accessing treatment the echr would be a way in which we could challenge that but if single people can access treatment but not get it paid for by the state it’s
Not necessarily clear that that is an infringement of the negative a right and indeed there’s never been any cases about this specific context but what there have been is some cases in the round where the ECR have heard challenges in relation to the distribution of State resources and
Public expenditure and the court in Strasburg has been very very reluctant to engage with those sorts of questions seeing them as falling within what the European Court called the margin of appreciation which is the margin that it gives to States state authorities to make its own decisions and indeed I
Think that the distribution of resources is often seen by the courts as a political matter as not necessarily something that is their um domain however that doesn’t necessarily mean that they would never intervene in this sort of context so what then might be the potential human rights claims I I
Think and for lack of time I’m just going to focus on what I think would be the the most likely human rights claim and that would be one about discrimination so article 14 of the European convention which provides quote the enjoyment of the rights and freedoms set forth in the convention shall be
Secured without discrimination and then it LS a bunch of grounds on which H discrimination isn’t prohibit is prohibited and then it says or other status okay so there are three questions here about whether this would amount to H discrimination the first is would the court hold that um this is actually
Something that satisfies the first part of article 14 H the enjoyment of the rights and freedoms set forth in the convention so the European Court might simply say actually the question of funding doesn’t relate to a right or freedom in the convention for the reasons I set out in relation to
Positive and negative obligations they might they might not it’s never been argued so I’m not clear on whether it would meet that ground then presuming that they did say that article 14 was engaged the next question then is is any discrimination Justified because discrimination can be justified on on
Various grounds under the convention and this is what in h the jurisprudence of the European court is called proportionality so it be a proportionality question and again going back to the point about the distribution of resources it’s not at all clear to me that a court would feel that this was
Something where they could step in on human rights grounds and just finally one other point that I want to make about this is that there are arguments around human rights that come from um the UN conventions what we call um the economic and social rights and things
Like that where there are rights to health but those at the moment are not um they’ve not been incorporated into domestic law in the UK which means they’re what we call soft law rather than than hard law they’re not something that you could go before a court and
Argue so they might influence the government in in when it’s passing legislation but they’re not things that the court could Challenge on all of this is then to conclude and say that as I said at the beginning I’m not entirely convinced that law offers us an answer to this restriction our next speaker
This evening is Dr Katherine James Katherine is a lecturer at Kings College London’s social genetic and developmental uh Psychiatry Center and Katherine is the author of research into people who are single parents by choice who are single fathers via tination at surrogacy and who are donor conceived and have single mothers so
I’ll be speaking not to exactly the question at hand but instead to describe some research psychological research on parents who do go fertility treatment as a single parent um and what it’s like for them for their family and for their children so to give a a brief overview
Of what I’ll be discussing today I’ll be talking about two studies conducted at the Center for Family research of the University of Cambridge um and the studies are led by Professor Susan gobook and these studies explore parent and child adjustment and um experiences and perspectives in single mother and
Single father families who’ve used assessed reproduction to start their family and the families um reflect families formed under different regulations such as before and after their 2000 change in donor anonymity and also the very recent changes in the last five or six years about parental order laws and before this research was
Carried out by fressa gbook very little was known about parenting parental mental health and child adjustment in these families so to begin with the first study is a longitudinal study of solo mothers and the term solo mothers is used interchangeably in the research with single mothers by choice so someone
Who actively decides to start a family alone um most often for using fertility treatment and the study was the first comparative study of heterosexual single mothers and heterosexual coupled mothers with children age four years and above um so at this age onwards then the children might start to understand a
Little bit about what it means to be in a single parent home and to be donor conceived so it offers um an opportunity to study children as well in their perspectives rather than um just the parent perspectives when children are in infancy and both family types use donation and the study was in-depth
Multi method and multi-informant so when families were first recruited roughly equal numbers of single mothers and coupled mothers were recruited with children who are Age 4 to 9 years old and about 23ds of the single mothers and most of the couple mothers had used an identifiable donor and they
Were recruited by the London Women’s Clinic but ended up living all over the UK including in Scotland and the families were matched so kind of no difference and child age or child gender the mother’s education or Pere financial difficulties and many of the mothers were in professional
Occupations at the second phase then um about 80% of the families took part again slightly more single moms en coupled moms took part of this phase and the children were in middle childhood into their sort of early teenage years in terms of the methods then um semi-structured interviews were
Conducted with the parent with the mother um about their quality of parenting and um also interviews were conducted with the children at both phases and at the second phase they’re able to kind of answer a few more questions and we did an attachment based interview with them the friends and
Family interview as well and standardized questions were completed by um the mothers and also by the teacher so the strength and difficulties questioner looks at child adjustments to gain a sort of independent perspective um and we observe the mother and child playing together doing a task together
And also psychiatrist rated did um part of the mother’s interview which is about child development in terms of family functioning um then at both phases then there weren’t any differences between the single mother and coupled mother families in terms of the mother’s mental health or quality of parenting or parent
Child interaction and also child adjustment and across both family types what was found to matter for child adjustment was factors that we find across many different studies of child adjustment so per financial difficulties and parenting stressor what’s of matters in terms of predicting child emotional behavioral difficulties rather than
Anything to do with family type in terms of the children’s own perspectives um at Phase One when the children were quite young we had to use some different methods in order to interview them in order to kind of elucidate their narratives at this early age and so one of the methods you can
See a picture there the children are asked to draw themselves in the middle of circle and draw people who they think are close to them in the closer circles and less close further away and um asked to explain who are these family members and so 47 children took part and when
Asked to describe their family two of them included the donor and one included donor siblings like in that picture you can see the donor is represented in black and the rest of the family are in red and only one child reported having been teased because of their family type
And at this age the children were more focused on the idea of Father absence than the donor in discussions with their mother suggesting some sort of social context influencing the children’s own perspectives of family life at the second phase when they’re a little bit older we had a more in-depth
Interview with them um gained a more in-depth effective what the children felt about the donor and also they’re able to describe the process of donor conception and um how their family was start started at this phase um there are different conceptualizations of the donor reported by the children um which
Were categorized as either positive negative or neut neutral and positive was the most common so when child said he’s probably quite a kind person the sort of person who wants to help people um quite contrast to one of the negative descriptions which is he’s just a weird
Man who helped make babies that’s it so the children were able to describe their own feelings at this age um and the rest of them described quite neutral terms in terms of the attachment findings then more positive mother child relationship quality was associated with more positive perceptions of the donor
More negative mother child relationship quality um conceptualized through disorganized attachment was associated with more negative perceptions of the donor so showing how family functioning um appeared to relate to how children felt about the donor but it would be important to do more longitudinal research to see how the children view
The donor into their adolescence and ear early adulthood so now to briefly describe the second study um the study was International and it looked at solo fathers and explored 21 solo fathers who’d used surrogacy and tination to start their family and the fathers described their sexuality is mostly
Mostly fathers identified as gay one as het seexual and one as asexual and the research started in 2018 so it kind of covered the change in the UK law about parental orders for single people um after this which will expect much more many more people to um start accessing
Surrogacy um as single fathers in the UK now um a little bit more easy for them so here’s a separate sroga and egg donor and the most common location was the US for surrogacy however there was striking variation in terms of the father’s experiences based in terms of the costs
And the experiences they had um and in some countries fathers are unable to access surrogacy surrogacy is banned in actually many countries across Europe so this created quite a diversity in where the fathers could access it and what it was like for them in terms of methods
Then similar methods were chosen to the solo mother sample in order to allow for comparison between the two samples so semi-structured interviews with the father looking at attachment and parenting and also standardized questionnaires and the children were much younger in this sample um so weren’t kind of able to do the same
Measures as a children the solo mother sample um but would be useful to to be able to follow them up at a slightly later stage so sub example of the solo mother’s sample was compared with the father’s and no differences were found regarding depression anxiety or parenting stress and the fathers um were
Generally um very happy and both um families reported very supportive networks that they had purposely kind of fostered and reached out to um both in the journey to becoming a single parent but also once they had become a single parent and because single fathers are kind of a minority family type um were
Interested in finding out um how they felt the public perceiv them and and reactions they had to their family type they felt that you know they often receive quite positive reactions yet also experienc respon responses reinforcing some normative depictions of family and family life and as very little research has
Explored single father’s experiences of tination and surrogacy in order to start a family he wanted to explore this in a little bit more detail um and found through narratives that a few key themes um emerged so firstly the fathers thought this is a really important opportunity to start a family um that
They wouldn’t have had otherwise particularly because um in some countries they were unable to adopt as a single parents so found it um really important to be able to have this choice to start their family yeah they faced um a number of challenges and constraints um particularly legal ones but also
Financial ones um and many of then reported that the surrogate had um a special relationship in their life um and that they had continued um being in contact with the surrogate and know describe the S as a friend or sometimes as for example a godmother so to summarize this um then
The research offers a novel insight into the lives of solo parents who use assessed reproduction and the parents and children are doing well but there are barriers to accessing treatment those already described today and also described by the participants in the study so only a small number of people
Are able to make this Choice um so really there should be equal access to fertility treatment not just regardless of relationship status but also regardless of gender regardless of sexuality everybody should have equal access to be able to start a family finally to conclude the presentations we have Professor gido pennings gido is
Amer’s Professor of ethics and bioethics at gent University and he’s director of the bio ethics Institute gent gido is chair of uh Belgium’s Federal commission for medical and scientific research uh on embryos in vro I’m here to provide a bit more of an international perspective
On the on the issue um and I have two examples of both my own country Belgium and France and just to give you an idea about the numbers so these are the latest numbers that we have available and this is on uh Cycles with donor
Sperm and as you can see these are 2019 and 2020 approximately one in three of all recipients are single women and so the other third bit more are lesbian couples and as you can also see is that in fact the number of heterosexual couples is around 10% so over the years they have
Almost not entirely but almost completely disappeared and the numbers you see here you have to be careful because they also include French couples so it’s just donor treatment regardless of the nationality of the persons that are uh having the treatment France as you might know they have changed their legislation in
2021 where they allowed single and lesbian couples access to infertility treatment they didn’t uh before um the um about a year ago they had around 5,600 persons on the waiting list for donor sperm of which again 36% lesbian couples and 38% single women now one of the problems for France since they are
Not allowed to import sperm is that the mean waiting time now at that time was already around 14 months and is probably going to increase in the coming years we’ll see what is going to happen uh this year now I’m going to give if you want a kind
Of ethical version of what alen was already talking about um an important thing when you look at uh the ethics of uh reimbursement in healthcare the first idea is that every country has to decide whether or not to include infertility treatment into the basic health care
Package so it’s up to the country to do that but the idea obviously is that everything that you put into the basic Healthcare package should be accessible for all regardless of the financial means of the person now obviously I’ve also been working on IVF in developing countries poor countries can with a very
Good reason say that they are not going to include infertility treatment because survival is more important than procreation so but anyway you have the idea that the states are free to decide whether or not to reimburse however however from a moral point of view there’s another basic rule
That says that if a state reimburses infertility treatment for some groups like for instance heterosexual couples it should also reimburse treatment for other groups unless relevant differences can be demonstrated if you cannot demonstrate relevant differences it means that you discriminate in the uh ethical sense of
The term and so the relevance here with refers to a number of different issues so normally these are morally relevant criteria that you use to decide whether or not some someone should have access and it might be for instance the welfare of the child the health of the woman or also cost
Effectiveness now we are focusing here mainly on the um Financial barriers but I would like to point at another kind of barrier that is uh especially in Belgium according to me one of the basic problems if you look at what is happening in practice then you will see
That every Clinic uses its own criteria to decide who gets access to treatment and probably within each Clinic every counselor also has her own criteria to decide who gets access and it does not necessarily mean that there’s some kind of uniform uh um uh list that is being
Used now also important is to realize that if you look at how the Belgian system works the primary uh role of the counselor psychologist doctor at the first appointment is gatekeeping meaning that they are there to screen to see whether the person is fit to have a
Child now I give you here the data it’s unpublished data I had hoped that they would be published in the meantime but it’s still not the case but so this is a clinic that looked at all the initial requests that were um made by single women at their Center in one year so
2019 688 requests were sent for information yeah you can see that exactly half of these women did not even send back the questionnaire now it turned out that this is a four-page questionnaire with all kind of very detailed questions about all kinds of different things in the present and the
Past of women so you can guess that probably they have self- selected themselves out so because they might have realized this is not going to work for them and of the remaining 344 almost one in four are rejected now this is compared to the other groups heterosexual couples and lesbian couples
Incredibly high so there there’s barely 5% I think that will be rejected in the other two groups so why is this now if you then look at the list it is quite amazing what kind of criteria are included so the single woman should be at least 25 years old in some cases even
28 years old before she can get an insemination she should not live with her parents she should have had long-term sexual relationship ship in the past she should not see her child as the only means of giving meaning to her life she should have a job or a stable
Income an extended social network not have a serious me physical handicap not be mentally and not have a life-threatening disease now if you look at all this you can start wondering whether all these criteria can be considered relevant because what exactly is the idea Behind These criteria and of
Course if you list them and by the way this is not an exhaustive list then you can fairly easily explain why so many of them drop out or are in fact U being rejected so that seems to be an ideological component that is playing on many different aspects of the screening
Process now we talked about payment now I I was a bit surprised but I I had a discussion just before this meeting I looked at the HFA data and then you can see so this is a publication of 2022 only 8% of the donor insemination treatments for single women and women in
Same sex relationships were publicly funded between 2016 and 2020 that is incredibly Low by the way in Belgium everyone who gets into the system gets reimbursed 100% so so whether it’s for IVF or for insemination it does not matter and it does not matter whether you’re treating in a
Private clinic or in a public Hospital everyone gets exactly the same amount of reimbursement but one of the important aspects that we see that is that people who are struggling to get through the financial barrier are in fact looking for a solution elsewhere and there’s a very recent publication by Taylor where
You can see that a lot of these single women lesbian couples are looking for a donor online with all the risks disadvantages and so that are following from there so if only for that reason it looks as if you have a very good reason to start reimbursing so that at least
That these women can have access within the regulated system and do not have to go elsewhere now strangely enough if you look again at Belgium we have also a problem for the simple reason that although your treatment is being covered your sperm samples are not covered and
If you have to pay for the sperm samples yourself you may realize that this is also going to be quite a heavy total cost especially by the way since Belgium has about a 10% success rate which according to everyone is quite low so but then you realize that you will have
To buy quite a lot of sperm before you might get pregnant and if people do not have to pay for blood and for organs then why do they have to pay for sperm and eggs so if the system would apply the same reasons it should go there now
The talk has been the previous talk has been mentioning single men most of the time they’re completely out of the picture no one talks about them it’s it’s pretty amazing because obviously we say that there are very few of them but of course if you know beforehand that
You’re never going to get accepted then obviously you’re not going to present yourself so how do we know how many of them are there so to conclude certain groups may have legal theoretical access to infertility treatment but encounter all kinds of obstacles in practice in countries that reimburse infertility treatment there is no
Justification for excluding single people and I think that criteria for exess should be specified to avoid unjust disc discrimination on the basis of prejudices ideological assumptions and so on just picking up on something that gido said about IUI and a 10% success rate with IUI Sarah is that what
You’d expect a 10% it seemed quite low to me 10 to 15% I think is reasonable so how much sperm would you think then then potentially then that in the Belgian system where you have to buy your own someone to be buying so I guess if the conversation that I would have
With a couple and I’m very cognizant of the fact there’s a lot of clinicians here in the audience but would be when we’re talking about paying for treatment is that there’s a calculation that you might need to anticipate three cycles of treatment to have about an equitable
Success to a cycle of IVF and actually the costs there are fairly equal in terms of the donor’s firm if you’re buying it is expensive per unit and you need one unit per IUI treatment cycle versus the cost of IVF which is more but obviously you then only need one straw
Of IVF donor thank you very much panel for a really good discussion I’m Adam Balin from Leeds I’m a gynecologist none of you spoke against paying uh or the state paying for single women I think in the UK we’ve got ourselves in a real model with funding
Um as I think we will all agree and I would suggest that uh we should open up funding for everybody um in an equitable basis um it’s kind of bizarre in West Yorkshire where I’ve been on the funding panel and pushed very strongly for the funding of lesbian women they now have
The ability to have six cycles of IUI plus one cycle of IVF funded by the NHS whereas heterosexual couples only get one cycle of IVF so we’re in a real mudle and given that the overwhelming evidence is that these children are wanted cared for and have excellent outcomes um probably better than in
Other circumstances of conception um I I think we need to take a step back and we need to open the doors for everybody we need to stop getting ourselves in a muddle about all of this and recognize that these children are wanted and contribute more to society economically than the cost of
The treatment themselves and just one last point on Sarah you were talking about the NHS cost of various treatments whether it’s for lung treatment of lung can or a broken hip when it comes to assisted conception the costs that we talk about are generally the costs that are charged
Through private clinics I work in a private Clinic so you know Declaration of interest but um when we looked at NHS tariffs of course they’re much lower so so fertility treatment doesn’t necessarily need to cost that much I think at the moment what we have is single people cannot access NHS funded
Fertility treatment and by definition therefore those that do have fertility treatment have the financial wherewithal and the support and so on to be able to do that so I guess one of my guarded concerns is if this is open to anybody then do we see a different pattern of childhood experience
Deprivation and so on where there isn’t that construct around it you know even as a couple we all appreciate that looking after children bringing up children you know you need a support network and so on and that’s my big fear maybe unfounded but I think the evidence
That we have just doesn’t explore all of what we have within the UK in terms of childhood experience a huge amount of poverty in Dundee and so on and I worry that actually we may be creating problems for these children rather than the you know the affluent so desired
Child that you describe so eloquently it’s true that the studies um often do find that people who are um kind of financially comfortable do take part in the research um um and this somewhat reflects the cost of people who the cost of having um fertility treatment so it
Creates these um sort of internal biases in the sample um but in terms of opening up treatment then I think even though then it might create slightly different Financial circumstances of people coming towards treatment uh the research shows that people who think about having a single child alone go through such a
Lengthy thought process about it um that they gather so much support and um take it in a really extensive period to think about it that I still believe the children would be um like well cared for and have um Extended networks of support even if we did start to see some
Variation in terms of um finances um but more research is needed with more diverse samples absolutely to better understand this from an empirical perspective even those who are poor are not going to stay childless they just find another way of getting pregnant so they go on the internet if you look at
The data it’s amazing the numbers there are staggering so the point is that you you take away the possibility to do it in a clean way in a supportive way and but that has nothing to do with our finances you’re punishing them twice now once by pushing them somewhere where
They don’t want to be and avoiding them getting access because they don’t have the finances so we know and that is I mean that’s clearly confirmed poverty is one of the worst things you can get as a child it it harms you in so many different ways but this is not about
Poverty this is about excess so these poor women will just find another way but they still will be poor so you’re just making them poorer if you make them pay for treatment so as far as I’m concerned they never win by the situation you create by not reimburse
My name is Jackie bavan I’m a a health psychologist from Cardiff University so is the major stumbling block one of resources and hanging on to resources and not wanting to pay for the NHS or is it still an issue of normative change around who should be a parent so there’s
Only some people who should be parents and I guess your long list of criteria for single people would suggest there’s um a higher sort of obstacle more obstacles for single people so are we just waiting for a big change in society or is it just getting the government to
Pay more for this kind of uh access the reality that I work in and I’m sure many clinicians do is that the NHS is not a bottomless money pit and governments are not bottomless money sources and therefore there is a reality checkpoint if you want more people to be treated
With the same resource you have to spread it thinner and that means people queue longer wait longer etc etc I am not averse at all to investing a lot of time and effort into getting the right people to come and be screened and donate eggs or sperm or whatever to
Provide that but again it’s a limited resource because we are picky about who we select because they need to have a good ovarian reserve or they need to have good sperm but I think the bottom line is there is only so much money in a Health Care system and it’s very
Difficult when somebody’s having a heart attack or got a broken leg or lung cancer whatever to say we want it all for the fertility clinic to help people have children you know there’s always going to be this socioeconomic argument about how you deal with resources and I don’t know benefiance and Justice and
All this kind of stuff as a clinician a fertility clinic bring it on give me every patient that wants a baby and I will try and help them if that’s that’s what they need and want but I I think that’s an unrealistic thought process in in the
Current fiscal climate that we’re in or generally in a National Health Service climate that we’re in that’s my only problem but I I would specifically say single people what you know you’ve got a same-sex couple you’ve got one woman that you’re treating at a time usually and they’re having donor inseminations
What’s the difference whether they’ve got a friend partner civil partner anything with them or not you know from Clinic clinical point of view the treatment pathway is no different for a single woman versus a couple being single or in a couple is not a relevant Criterion here but for instance you
Could use the one that I saw on Sarah’s first slide you could say someone who already has is a biological child should not get money first so you could have a point system where you say okay those who already have a child should only get
When we have too much money and as long as there are people without the biological child we going to spend the money there but then you have to justify what you’re doing it’s not as if I’m saying you should spend uh more IVF money on someone who already has 12
Children I would say this seems more than enough so but then it’s up to me to say why I’m doing it and that’s what I’m trying to defend give me a good reason not just one like I’m single and you’re in a couple so tell me why that is
Relevant so that that is the point but you will anyway because there’s no endless amount of money available you will always have to make certain decisions we do it for age we do it for a number of other things so and it seems very justifiable to me so it’s not as if
I do not want any criteria I just want the criteria to be justified and not just something that I’ve made up because I feel that W that is this is too much or this is this is wrong give me a good reason and and that’s
What I feel is lacking at the moment and that bothers me as a as an ethicist there is an element you talked about whether it’s normative I do think there’s an element that this is slightly Downstream of historical distinctions in law between single people and couples that have obviously now been eliminated
In this a a formal sense but then when it comes to Resource allocation like these these images come back in in that stage so you know when the human fertilization and embryology Act was passed in 1990 there were more restrictive rules on the types of couples that could access treatment at
That point you know in the legislation not just in terms of funding and I think you know if we go back further there were distinctions made in law you know as recently as the middle of the 20th century about your legal status based on whether or not your parents were married
You know this is it’s not stuff in the life cycle of our understanding of of individual status is that long ago so I think it makesense sense that then when there’s a sort of age case of funding these normative ideas come back in even if it’s subconsciously even if none of
This is conscious so I do think there’s an element of that Stuart Lavery I’m a gynecologist in London working in the NHS and we treat single women okay but they have to prove that they’re infertile and what does this mean ethically Guido can you reassure us that saying you have to prove you’re
Infertile therefore allows rational compassionate ethical allocation of resource or is it just that we think that heterosexual couples are more deserving of Parenthood or is it just a Great British fudge that we use to deal with a challenging situation so my bottom line question is should people have to prove that they’re
Infertile before receiving funded care and my answer would be no I don’t it it makes much sense because I don’t think if you look at the total activities that people are doing we are not treating infertility we are treating involuntary childlessness and that’s what we are
Doing and so if you stick to the infertility issues you want you you make this into a medical thing but what is medical about being infertile by the way this is the kind of discussion that people have in developing countries so are you going to die no how long are you infertile till
You die or just until you’re going to menopause so start looking at this at the burden of disease thing and you will see that there’s an awful lot of very difficult questions entering so what we are trying to do is to make people realize a certain desire that they have
In life and according to me that’s the Criterion so and then we can start looking as I said if you already have 10 children you can say say your desire probably is satisfied now so let’s now go and look at someone else so but the idea of making this into a medical thing
Where you have to prove that there’s something wrong automatically excludes a very large number of people we had a discussion before I can say as a lesbian that my partner is aspermic so she’s infertile and so she’s going to be treated now everyone realizes that this is kind of funny Reon
But at the same time that is the kind of reason that you’re looking for when you want to have this into a medical thing look at this as something broader and of course if you take the the U the United Nations definitions of uh well-being and health then you will see that everything
Falls under it so it’s just up to society to decide how we’re going to look at it but I think it’s the wrong approach you already exclude so many people for what for what reason what do you do with the Unexplained infertility what do you do with you know we have a
Way of talking ourselves out of it if we want to and and this is what we are doing most of the time thank you my name is Joan I’m an embryologist and I work for the NHS in Scotland and I’m quite interested in the ethics in terms of
Equality and equity and there are a lot of other societal barriers um for that I can see for single people trying to access treatment so are we really just offering treatment to people who can then afford to have a child um as a solo parent you’re considering the cost of
Child care that you’re going to have to bear the burden for as a single person rather than that Distributing between two people the impact on your career progression that you may not be able to have those same choices because you are the primary caregiver um I think there
Are other um uh group groups that that traditionally struggle to Access healthcare so people who come from poer socio economic uh backgrounds um individuals with disability so actually are we offering an equitable treatment if we open this up if you’re looking at surrogacy it’s the cost of surrogacy
Within the UK um that individual needs to be able to afford those costs so are we really talking about Equitable access or are we talking about creating a a situation where it’s only individuals who can afford to have a child are we really talking about Equity of access
True equity for all of us the future is uncertain for all of us our finances are not necessarily certain tomorrow is a new day and things happen people get hit by buses people get divorced relationships split up people go separate directions and I think you know
If you sat at the age if I don’t know mid 20s and said this is how my life is exactly going to go and I’m still going to be married to this lovely gorgeous man with my 14 children or whatever it is then most of us would not end up in
That position 20 years down the line so I think it feels almost like that’s quite an unfair question to ask I think if I think G you said something about you know people that come forward to to be single parents have have a have had a thought process and had thought about in
Quite a great amount of detail about how they’re going to pay or be a parent or what support they have or you know whatever and I don’t think as a clinician it’s my job to sit in front of somebody and work out whether they’re fiscally responsible or whether they’re
Going to be able to afford x y and Zed because I’m a clinician it’s not up to me to work out their life plan and we certainly don’t do it if they’ve got a husband or a wife with them so you know on some level I think you’re setting too
Many inequities or too many potential barriers to to somebody else’s future ordinarily when rationing decisions are made in healthcare they’re made on clinical grounds you know so if there’s a range of treatments for a particular condition there’re are cost benefit analysis about whether using expensive or inexpensive ones that’s not what
We’re talking about here so I think it creates a really interesting framework where the people making these decisions are still clinicians but when they have to decide who should get access to fertility treatment it’s it’s a combination now of clinical considerations and non-clinical considerations and I think actually when
You talk about the I think that’s part of the mess here that like clinicians are essentially being asked to reckon with factors that are nonclinical in the the distribution of treatment um because of the the resource position that we’re in which has nothing to do with the clinical
Determinations um and I think that speaks to questions that are much much wider than who should have access to fertility treatment it speaks to questions about how our society is funded if a a 20-year-old heterosexual male turned up wanting treatment on the NHS what would you do would you think
It’d be fair to treat them if you would treat a heterosexual couple that are both 20 what are you going to tell them wait until you’re 25 28 because you’re clearly not capable of making decisions sounds sounds like a weird thing to say so but that’s what they do with the
Single women so for a single man it would be the same why do you think the person is not competent we decided all of us together that there are certain ages at which unless you can prove me wrong we assume that people are capable of making decisions they can do so when
They are naturally fertile and so they can probably also do so when they have to go to a clinic so I I I don’t I don’t see how you’re going to justify a refusal unless as I said you can show that this person does not really know
Know what he or she is doing and that sounds like a good reason to say uh wait a bit come back in a few years but but outright why would the age be a relevant thing uh we we can vote at 18 okay and wrong too
But but so as far as I’m concerned but but by the way just to make something clear about the uh single men and single women I think that surrogacy might be a relevant difference so I’m not saying that they should be treated equally so I think that if you have a problem with
Surrogacy you should have it for everyone so but that implies in one case that the single man would not have access but I think it would still be justifiable so it’s not as if I’m saying that it should all be the same if you think there’s a problem with cacy then
It is obviously more of a problem for single man than it is for sing single woman I’m not sure that I see the need for surrogacy as being so very different because if you were a single woman with no utus or if you were a couple and the
Female had no utrus then surrogacy would be part of the fertility requirements I think if you’re going to treat somebody who is single then whether they’re 20 in male whether they’re 30 in male whether they’re 40 in male God forbid they 70 in their mail you know we don’t have any
Eligibility criteria and this welfare of the child form which is extraordinarily difficult to really decline anybody treatment I think in the entire time I’ve been a consultant nearly 15 years I’ve only signed one where I felt that we couldn’t at that point in time at least progress fertility treatment you
Know I think if if if it’s agreed that single people should be funded then being 20 single male should be no different to being 25 single female etc etc but I I say that’s through very gritted teeth