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Womb Transplants and the Idea of “Going Too Far”

There was an article in the Montreal Gazette a few weeks ago that Bleu sent me about womb transplants.  A Turkish woman born without a uterus underwent a uterus transplant (from a brain-dead donor) in 2011, and now she was getting ready for an embryo transfer constructed out of her egg and her husband’s sperm.  The article also mentioned two women in Sweden who received donated uteruses from their mothers.

What bothered me was the second paragraph.  After presenting the lede, before getting to any of the relevant information, the author of the article paused to write:

Human uterus transplantation — the latest coup in assisted baby making — is raising new questions about how far we’re willing to push the outer limits of procreation.

It’s a coup?  Talking a notoriously stingy boss into a raise in the middle of budget difficulties at work is a coup.  Providing a human being with an organ they were born without?  I’m not sure if I would use a term that makes the reproductive endocrinologists and surgeons sound like little scamps getting away with one of their hair-brained schemes.

How far we’re willing to push?  Do we use that language to discuss heart transplants?  Or kidney transplants?  When we’re talking about extending life vs. beginning it, do we ever talk about a practice common for other organs in the body as going too far?

This type of opening creates a bias in the reader.

The questions aren’t unfounded, but they also aren’t unpacked until much later in the article when the doctor points out the ethical concerns:

Who is responsible should something go wrong, he wonders? “What’s the strategy for handling a stillborn baby, (or) a damaged baby?” Is it worth the risks when other options — surrogacy or adoption — exist? “Is it worth taking the risk just to permit the person to deliver the baby? How important is this?”

Those are valid concerns.  Who is responsible?  The patient who made the decision to undergo the transplant or the doctor who agreed to do it?  Are the risks worth it?  Should we keep trying to work out ways for women to experience pregnancy or use their own gametes, if other paths to parenthood exist?  What about the cost — financially and emotionally and physically?  There aren’t easy answers to these questions, nor can they really be debated in a vacuum: there are very real people with very real feelings living out all these hypothetical situations.

It isn’t until much later — again — in the article that we get to the heart of the matter.  Why take the risk?  “While surrogacy would be simpler, Akar said that the practice is illegal in some countries, including Turkey.”  Politics is why she is taking the risk.  Politics, which affect the uterus of every woman in almost every country, just in different ways.

Which made the ending words of the article all the more poignant:

Last year, Montreal researchers developed guidelines for a woman to be ethically considered a candidate for a uterus transplant. The proposed criteria include that the recipient doesn’t exhibit “frank unsuitability for motherhood.”

“If the goal of the (uterus) transplant is to have a child, then ethically we should ensure that that person is capable of caring for a child.”

It’s obviously a sound idea, but how can one not think about the state of reproductive rights around the world, especially in the face of Personhood bills?  In Montreal, they’re suggesting withholding a uterus transplant from a woman if she can’t prove that she is capable of parenting.  In America, we force women to carry a child if they accidentally become pregnant, even if she is seeking an abortion because she knows she is not capable of caring for a child.

So if a woman requests a uterus because she was born without one, and she is willing to go through the physical pain of surgery and the financial burden of surgery and the emotional fallout of surgery, she still needs to prove whether she is capable of parenting, by these Canadian standards.  I’m willing to bet that the average woman born without a uterus who is undergoing something as difficult as a transplant is someone who has given a little thought to wanting to be a parent.  But a woman who is raped in North Dakota and becomes pregnant, if their ballot measure passes, will not be able to terminate the pregnancy if she states that she is incapable of caring for the child.  I’m not impressed with the ideas that either country holds for their women on either side of the need spectrum: either needing assistance to achieve a pregnancy or needing assistance to end a pregnancy.

I’ve always loved the Art Buchwald piece called “Throwing Out the Bath Water” which ends: “I’m with the ‘Right to Life’ not ‘Right to Live.'”

The world is so concerned about making women jump through hoops to have a child if they need assistance conceiving, and we’re so concerned with making them carry a child to term if they become pregnant before they’re ready: but why aren’t we showing that same concern for the children who are here and falling through the cracks while we focus all of our attention on conception and pregnancy?  It feels, sometimes, as if we are obsessed with those nine months of pregnancy, wanting to control it as much as possible with rules and regulations, but then, once the child is here, politicians move to a phase of hands-off.  It’s not that we shouldn’t be concerned with the ethics of conception and birth, but we shouldn’t make it our sole concern without any regard to the 80+ years that come after a birth in a person’s life.

I really hope I live to see the day when women will have control over their bodies, and be able to treat their medical conditions as their doctor’s see fit.

22 comments

1 Bionic { 03.24.13 at 8:28 am }

I used to have some sympathy with the idea of screening people for parenthood, until I had to go through it myself. (Our fertility clinic — and most of them, as it is a recommendation from their board-certifying body — requires counseling for anyone using donor gametes. In practice, this means that all single women and same-sex couples are put in the position of having their right to reproduce mediated by the medical establishment.) Even though I knew there was no way we wouldn’t “pass,” it was a horrible, dehumanizing experience. It opened my eyes to understanding that just as we should have reproductive rights — the right to control our fertility through birth control, abortion, no forced marriage, etc. — we must also protect reproductive freedom. Human beings should have the freedom to reproduce, and we should look with extreme scrutiny at efforts to prevent their doing so. In the IF community, we often think of those efforts in terms of insurance coverage and so on, but historically and currently, the bigger issue is poor women being forced or coerced into putting their fertility in the hands of the state. We are not so removed from forced sterilization of poor women, and coerced sterilization still happens.

/soapbox

2 Bionic { 03.24.13 at 8:39 am }

Reading over this, I’d like to just throw in that I in now way think that things like insurance coverage for infertility treatment ISN’T an important issue. I get a little vehement sometimes 🙂

3 Kitten { 03.24.13 at 9:03 am }

I’ll admit, one of my first thoughts when I read about this was “Sounds risky and expensive.” My second thought: “I bet that’s what people thought about IVF when they first started doing it.” I’m not saying that the concerns you raised aren’t important, because they are. I’m saying that similar concerns were probably raised when IVF was first introduced. It will take many years and lots of expensive research and trials to make reproduction with a transplanted womb a feasible option. How wonderful to have another option!

4 Lollipop Goldstein { 03.24.13 at 9:10 am }

Bionic, I think as a society that we send messages that speak volumes about how we really feel about children. I don’t think that abortion is about the baby at all, or giving it a chance at life — I think it’s about controlling women. If we really believed the children were our future, we would do more for them while they’re here — educating them, feeding them, raising them. The same people who fight to have children born should be fighting to make sure they have their needs met until they are at the age of adulthood. But they’re not.

I think it speaks volumes that infertility is not covered under the Affordable Care Act. It’s difficult to believe people when they say how important children are when they are doing little to help parents who are capable of raising children to actually match with children.

I know a lot of decisions come down to money, but I also think that a lot of decisions come down to controlling another person. And I think, unfortunately, babies become the pawns in this, with the real focus being on the Queen.

5 Prairie { 03.24.13 at 10:32 am }

Well said.

What I am thankful for with this article & discussion is that they put the uterus on the table as an important component in reproduction. Too often society thinks you just need sperm & an egg. Nope. You need a good looking uterus too.

6 ANDMom { 03.24.13 at 11:09 am }

But from a different perspective – that of organ transplantation – the recipient of ANY major organ is subject to intense psychological counseling and testing to determine if they are going to use that organ appropriately. Ethically, they WILL NOT give you a liver if they suspect you will go out and have a celebratory glass of champagne, they will not give you a lung so you can smoke, or a heart so you can eat bacon every morning. Transplanting major organs is a major undertaking with huge risks – they want to make sure that it’s going to be used responsibly. And in the case of a uterus – yes, that you’re going to be able to support and raise a child that is gestated within it. Ethically, they’re not going to give you a uterus to create a child that will end up abandoned or abused. And maybe 99.9% of people who would consider it are good candidates – but it has to be part of the process to ensure someone is psychologically sound.

And yes, the concept of organ transplantation in general is discussed as pushing possibly “too far”. Look at the concept of living organ donations (kidneys, livers) – it is RIFE with controversy, if it’s even medically sound, because it does physical harm to a healthy person.

I get where you’re saying about how we should all have the right to reproduce by whatever means we deem appropriate, but at the same time – in the conversation about organ transplantation, this is no different than any other major organ. So unless we’re willing to give OTHER viable organs to people who are not screened for proper use … it does make sense as part of the screening process to make sure that good will come from it.

7 Rachel { 03.24.13 at 11:14 am }

As someone who was denied Fertility Treatment because I was overweight (was since I was so young (25) I had DECADES to get pregnant, so first I need to get in tip top shape). There was no regard for what I wanted…I wanted kids in my 20s, I was already married, I was only mildly over weight – many women much heavier than I had children. My OB-GYN didn’t see a problem with my weight because it wasn’t excessive and I was active. But my Fertility Specialist felt that she wanted me to be in the best shape before they would entertain the idea of assisting me to conceive. She said that, had I been in my 30s, my weight wouldn’t have been a big issue but because I was so young, we had plenty of time and they always encourage younger women to invest the time to get in their “best” condition prior to conceiving. No one asked me what I wanted, they just gave me a big fat NO for two reasons…#1 – I was only 25. #2 – I was about 40 pounds overweight. I lost 37 pounds, but I didn’t go back. We’re still deciding what to do. I didn’t like the way I felt like my wishes were insignificant, and that I had to meet the standards of this fertility specialist who was, in essence, playing God. Instead we’re going with adoption, which I love the idea of – but it is more difficult and more expensive than treatment (which is the only reason we didn’t go with it initially).

It is about control, and there is TOO much control already. Whether fertility treatments or adoption or uterine transplants or abortion…it’s only the ones who need help who are getting penalized. Any woman -whether mentally fit or not – can have a child naturally and no one blinks an eye. But you need assistance (whether to conceive or abort) and suddenly every one has an opinion and regulations you have to succumb to. Having a child (or not having one) should be one of the most basic of women’s rights. And somehow, it’s slipped through the cracks – along with all the unwanted children in the world. When are people going to stand up?

8 Another Dreamer { 03.24.13 at 1:30 pm }

Very interesting piece Mel, and very well written. You are right about the control, and I love hearing your perspective.

9 mijk { 03.24.13 at 5:14 pm }

Being Dutch I thought about this.we have abortonrights but affordable healthinsurance aswell seems much more reasonable then the other way around!

10 Lollipop Goldstein { 03.24.13 at 5:45 pm }

There definitely needs to be regulations in place with organ donation, but the criteria that they are making for uteruses differs enormously from the criteria they are using for livers or hearts.

They’re not asking how the recipient will treat the donated organ but how they’ll treat a separate person who comes from that organ. If the criteria was “will you use the uterus and not put an IUD in it,” I’d think it was similar. But this is asking about the job they’ll do with parenting. And parenting has NOTHING to do with how you’ll treat the organ.

11 Elana Kahn { 03.24.13 at 6:17 pm }

Here here! I think it’s incredible that they can do a uterus transplant and have it work properly. What an amazing advance in assisted reproduction. Some people just need to grow brains…

Happy ICLW!

12 Alicia { 03.24.13 at 7:51 pm }

Wow. Options like surrogacy and adoption are not for the faint of heart. In fact, they come with a lot of emotional baggage for everyone involved and I don’t understand why people would even question organ transplants such as this. Doesn’t it make sense that a uterus would be given to someone who needs it? It frustrates me to no end that there is controversy at all when it comes to procreation – judgment by those who have never experienced the medical conditions affecting fertility.

13 Queenie { 03.24.13 at 10:33 pm }

With women’s legislative participation hovering somewhere around 18% federally and 24% at the state level (ND is at about 17% at the state level), how can we honestly expect anything better? Men can vote on reproductive rights in the abstract, because they will mostly never have to personally deal with the nuances of reality. And who likes abortion in the abstract? No one, because it sucks. No man will ever be faced with being young and poor and alone and raped and pregnant. Or 40 and tired with three kids already. Or pregnant with a child who won’t survive past birth. Or the myriad of other situations women find themselves in which cause them to choose between a number of rotten options. Men may sit beside that woman, but they will never BE that woman.

If we want better for ourselves, we need to step up to the plate. We need to be seated at the table. We need to realize that legislating isn’t just for wealthy white Christian men. Want policies that reflect your values? Send people like you to the legislature.

14 Amber { 03.25.13 at 1:57 am }

It’s amazing to me that there is such a tight screening process when it comes to infertility and whether you would be a good parent. Yet, drug addicts can have babies over and over again that end up in the foster care system. Shouldn’t their uteruses be taken away? I mean, they are not fit parents, and yet nothing is done about the fact that they keep having babies.

15 loribeth { 03.25.13 at 8:40 am }

Interesting news item & some great points in the comments too. I have to admit that one reason I decided DE & surrogacy were not for me was it all seemed just a little too “sci-fi” (remember, this was well over 10 years ago, & neither option was as common then as it is today). But someone has to be first, right?

I’ve been thinking about the question of risk vs reward the last day or two, as I just finished a book about the first explorers who attempted to climb Mount Everest in the 1920s (review on my blog, if you’re interested). Some of them died in the attempt, but eventually, they were successful, and while climbing Everest is still a risky venture (something like one in 10 climbers dies trying to reach the top), it is possible today because of those first few climbers who found the way to the top. Some might question whether climbing Everest is worth risking your life over — but who are we to judge?

Thank goodness for the pioneers, the people who are willing to take the risks and submit themselves to the experimental treatemnts that we all learn and benefit from — the Lesley Browns of this world.

16 Amy Elaine { 03.25.13 at 11:44 am }

well said!

17 cindy { 03.26.13 at 10:28 am }

That is so interesting

18 Sara { 03.26.13 at 8:24 pm }

Regarding ANDMom’s comment, the reason that they won’t give an alcoholic a liver is because there are not enough donor livers to go around, so they are trying to maximize the number of liver-years (not sure if they put it that way!) that they will get. In other words, it’s not about an individual’s “worthiness” for a liver, but rather their medical suitability as a candidate for transplant. Since there is not, at the moment, a critical shortage of donor uteri, the situation isn’t the same at all.

I agree that it’s about controlling women. I also agree with Bionic that mandatory counseling for people choosing a specific medical treatment is dehumanizing. I can understand recommending counseling, but policies that mandate counseling, even if you don’t want it, can’t afford it, and don’t have time for it, are coercive and paternalistic. Kind of like that article.

I wish the family involved the very best of luck moving forward.

19 Mash { 04.10.13 at 11:18 am }

It’s tough. I don’t know what I think about this. I read an article a few weeks ago where a woman had seven of her children die (one by one) because of a mitochondrial disease in her eggs. So now there is a procedure which fixes this, mitochondrial transfer of some sort, but I’m thinking – what kind of snobbery made her insist on falling pregnant over and over again instead of using a donor egg? She knew she had this disease… 7 children died, and I’m pretty sure only 6 of them needed to. There is a human rights issue at play there, but I can’t work out exactly what it is. Should we stop women from falling pregnant if there is a guaranteed hereditary situation that will cause their children to die?

20 Aerotropolitan Comitissa { 04.14.13 at 9:30 am }

First of all, I think coup is entirely the right word. You seem to have a different usage of it. I would only use coup in the context of asking for a raise if I was trying to be humorous (and/or condescending – but I generally try not to be condescending). To me a coup is a mighty event, such as a takeover of an entire nation, or the merciful ending of a doomed life – sometimes noble, sometimes nefarious, but always of enormous import and full of courage and daring. So I think very appropriate for the act of transplanting a functional womb (as if reproduction wasn’t tricky enough for our species).

But on to more serious stuff:
@ Mash – it would be interesting to explore the context of that decision. For example, was egg donation available to that woman? It is still not a practical consideration for many women, never mind the more abstract issues. It would also be interesting to know at what point the mitochondrial issues were diagnosed, and what she was told about her chances of producing a surviving child. Definitely some ethical issues at play there, and it must be so hard and complicated to have to face those kinds of issues personally.

Getting back to the original article, it doesn’t sound like the ethical issues were covered all that well. The way I see it, womb transplantation carries the usual concerns which surround transplants, which are often donor-related – respecting the rights of cadaverous or brain-dead donors – actually less of an issue here as the transplant is less urgent. Living donor transplants share some concerns with surrogacy and egg donation (issues of risk to and respect for the donor/surrogate). In this case, as Sara said, there are fewer concerns about distributive justice – although the comparison is not a good one as the procedure is still very much in the experimental stage compared to other organ transplants. Certainly that is not much of a concern at present.

There are greater recipient-related concerns, however – in a liver transplant, the recipient is dead if you don’t try it. This tends to simplify things somewhat from their perspective. Here, the article rightly points out that the recipient has other options such as (yes) adoption, surrogacy, or resolving to live without children (not mentioned…?). Of course none of these are easy or without issues all their own, but when you have more choices coming to the right choice is going to be more complicated.

I think in all reproductive situations you do have to think about the safety of the third party (the child) as well. With respect to womb transplants I don’t think parenting skill is the main concern, however. I’m talking more about the practical risks involved with organ rejection (and its management) and being gestated in a transplanted organ, which may be a riskier gestation. It should be noted that these things have concerned the transplant doctors involved, too, and they have worked hard to assess and minimise these risks. Here there is a big analogy to IVF in the early stages – people had legitimate questions about how the procedure would affect the children, and although the doctors involved were feeling pretty confident I think we are only just now gaining the sort of information some need to feel comfortable (note that scientists spent a lot of time tinkering with animals before moving to humans, and that the first generation of IVF children are still being followed – note also that some people still don’t feel comfortable with the safety of IVF or at least certain versions of it – six or seven years ago one IVF patient I know drew the line at ICSI, citing safety concerns).

As for parenting skills, there is always this question as to how much that is anyone else’s business. (Actually just to close off the last paragraph for a second I would say we have long had enough info about the general safety of IVF to make it not anyone else’s business, although if an individual patient wants to draw their own line at ICSI I am not offended by that, even though we did ICSI ourselves.)

The murky truth is that at some point the state should step in to protect the innocent minor. Some kids have been rescued from terrifically abusive environments, and here’s to that. Some adults have got themselves to a point at which their children are automatically confiscated at birth, because they have shown themselves to be so unfit on so many occasions, and you would have to go out on an extremely fragile limb to disagree. But this is a really tricky one because we don’t want to go around harassing people about their parenting choices just because it’s not what we’d do, either – somewhere between disliking the fact that such-and-such sometimes uses sarcasm with her five-year-old and the situation where so-and-so neglects her kids to the point of starvation and death because she’s just that far short of having her shit together is the line, but it’s hard to define. In terms of giving people the chance, however, I err on the side of innocent until proven guilty. And I think in Montreal they feel the same way: “proposed criteria include that the recipient doesn’t exhibit “frank unsuitability for motherhood”. I don’t think they’re “suggesting withholding a uterus transplant from a woman if she can’t prove that she is capable of parenting.” I think they’re leaving the door open to say no in exceptional cases. The proof, of course, is in the interpretation – in whether they choose to actively assess people as obviously happens in some places from above comments, or whether (as in Australia) they assume you’re ok unless you come in with an enormous red flag waving above you and some flashing lights and a noisy alarm bleating “alert! alert!”, and also in where they draw the line for saying no.

In any case, I agree that due effort needs to go in to ensuring the safety and respect of the donor, recipient, and potential child here. However, are we sure this is a position anyone can make news out of? (Huh. Maybe I’m condescending more often than I realise.)

It’s important to note that womb transplants are hardly something people have dreamt up overnight. There has been a lot of effort coming to a point where we are comfortable to try this out, and at this stage I think we can be optimistic about its potential and can even hail it as an ethically attractive addition to the current range of technologies. As for pushing the boundaries, I smirk a little because the whole point is to make things as old-skool as possible – one mother carrying and delivering her child, just like gran’ma used to do.

21 Aerotropolitan Comitissa { 04.14.13 at 10:04 am }

Actually, on re-reading the article I’m not clear on who said the last paragraph after “frank unsuitability”. I had assumed it was the journalist, but it might have been Caplan or even from the guidelines themselves.

The article seems a little hacked up, to be honest. I wonder what the original copy read like? The published version is quite disjointed in the first half.

22 It Is What It Is { 04.14.13 at 5:25 pm }

I am not sure how I missed this post originally but just sent you the news that she is, indeed pregnant now, through IVF. There’s a lot surrounding just that fact, that the uterus, under the influence of anti-rejection medication was still able to become pregnant. Now we will have to see if A) she can deliver a live baby, and B) if the baby is healthy and, if not, if any defect can be traced to the anti-rejection medication (or was it genetic). And, given the penchant for control over a woman’s body, what if the fetus has an anomaly (either compatible or incompatible with life) is she free to decide to terminate the pregnancy?

The first transplant was in 1931 and the woman eventually died when her body rejected the womb. I wonder, if that were the case today, if a hysterectomy would have saved the woman’s life (since a uterus is a non-essential organ).

Medical science now allows for myriad ways for women/men/couples to have a family and since we do not sanction or govern how/when/under what circumstances naturally conceiving peoples get pregnant and have babies, it bothers me that especially when ART costs are out of pocket that the government or any state would step in to say a woman would have to prove she is capable of parenting (and, to that end, who is devising the assessment of that and what does it entail)?

If it had not been for the women being willing to subject themselves to early IVF (which required the open surgical removal of eggs vs how they are retrieved now) then none of us who conceived using IVF would be mothers and if no woman was willing to donate her eggs or couples their embryos still others of us would still not be parents. They are called pioneers (both the recipient and the doctors) for a reason and the end of this story has not been written.

And, yes, while recipients are psychologically screened to ensure they are good candidates to receive a donated organ, there is NOTHING that can functionally prevent them from abusing the organ (so, a liver transplant recipient with a history of alcohol abuse begins drinking again. Not going to take back the liver and we know alcoholism is its own disease process so the likelihood of recurrence is there even if they are granted a transplant because they are clean at the time).

I am interested to see where this goes, if she remains pregnant and if she delivers a healthy baby. If so, it is and will be revolutionary.

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