Infertility, ART and the Nature of Consumer Society

There was an interesting op-ed in the NYT yesterday.   It’s about the commercialization of infertility treatment, but I think it makes points that can be understood more broadly.  And, somewhat like the adoption story I blogged about yesterday, it makes me think about the importance of trying to put a bigger frame around the problem.

The authors–Miram Zoll and Pamela Tsigdinos–are women who pursued/endured “increasingly invasive and often experimental interventions, many of whose long-term health risks are still largely unknown.”  The treatments were unsuccessful and eventually Zoll and Tsigndinos decided to stop.  This is a decision the women are (now) happy with:

Ending our treatments was one of the bravest decisions we ever made, and we did it to preserve what little remained of our shattered selves, our strained relationships and our depleted bank accounts.

Having been through the treatments, the women now turn a critical eye on the fertility industry.   “[W]e study its marketing tactics with eagle eyes, and understand how, like McDonald’s, the fertility industry works to keep people coming back for more.”

I think it’s quite right to examine these tactics closely.   There’s no doubt in my mind that a lot of advertising preys on the pain and vulnerability associated with infertility.   There’s nothing like offering a cure–giving people hope–to get customers to beat down your door.

But of course, this isn’t just true of the fertility industry.   Pick up a newspaper and scan the ads for medical treatment centers/drugs/experimental surgeries and so on.   Go look at the ads aimed at those with male pattern baldness, say.   Or wrinkles and age spots.   Or even those with cancer or heart disease.

You can say it’s all about free information and consumer choice or you can say it’s horrifying.  And both are partly true, I guess.  Perhaps it is in the nature of the free-market approach to medical care and free speech being extended to medical/pharmaceutical advertising and all that.    It’s not that I don’t think there’s a legitimate complaint here, it’s that the complaint can really be writ much more broadly.

Does the fertility industry in particular behave badly in this commercial environment?  I don’t see that it does.   It does what all sectors do–it advertises, it tries to convince people they need the services it provides and that it can provide them better than anyone else.   It’s not that I think this is a defense of the industry, but it’s a way of placing the criticism in a larger frame.

Zoll and Tsigdinos also identify another facet of the problem, though, one that I’d like to highlight. Perhaps this points the way towards a solution.    (And I’ve talked about this before, though I don’t have a link to quite where at the moment.)  It’s their last paragraph:

Being unable to bear children is a painful enough burden to carry, without society’s shaming and condemning those who recognize that their fertility fantasy is over. It is time to rein in the hype and take a more realistic look at the taboos and myths surrounding infertility and science’s ability to “cure” it.

Infertility (and I’m realizing that the meaning of that term may be somewhat ambiguous) won’t kill you.  It isn’t like cancer.  I don’t mean that the pain of infertility isn’t real–it is for many quite real and substantial.  But in a way it is rather like male pattern baldness.  (I’m sorry if this gives offense to folks–please bear with me a moment.)     It’s a problem because we (as a culture) believe it is a problem.   It’s stigmatized.   It makes one an object of sympathy.  And I’m not convinced it has to be that way.

After all, people who are infertile can raise children and become parents, whether via adoption or via third-party reproduction avenues.   So it’s not that you miss your chance to be a parent.   You miss your chance to be a genetic parent or maybe your chance (if you are a woman) to be pregnant.  And we (as a culture) tell you that’s a huge loss and that you should do a great deal–invest your time and money, subject yourself to painful and perhaps risky treatments–to avoid it.   I take the call at the end of the essay to be one for rethinking this, for de-emphasizing the importance of the genetically-related child or perhaps for having children at all.  (Which reminds me of the recent Time magazine article on child-free living.)       It’s a call I would like to join.

One final side point:   Zoll and Tsigdinos quote some statistics on the success rate of ART.   For instance:  “In the United States, the Centers for Disease Control and Prevention puts the overall failure rate at almost 70 percent.”    It’s important to put statistics like this in context.   Susan Crockin (a lawyer expert in ART matters who also teaches at Georgetown Law School) did that this way:

“there is a 1 in 3 chance in nature of conceiving. This argument. . .  spins the “almost 70%” failure rate w/o acknowledging an overall success rate that parallels or slightly exceeds nature and in specific
patient populations exceeds them significantly.”  (emphasis added).

Statistics are always open to interpretation and restatement, of course.   There’s just lots of ways to think about these things.

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27 responses to “Infertility, ART and the Nature of Consumer Society

  1. I admit to being baffled by how people are treated or feel they are treated. I’ve lived “child free” for the last quarter century and have never felt stigmatized, shunned, shamed, or been looked at with sympathy, or pity to my knowledge because I am not raising children. (and the vast majority do not know I had a child who passed.) That’s a fairly longitudinal view of how society has reacted to me – could some of be perhaps all in the attitude one portrays, or the assumptions people make about how others view them?

    BTW Julie – your picture avatar on twitter is back to the default egg for some reason.

  2. There is probably much truth that doctors do fill sterile men and infertile women with too much hope that their medical problems can be corrected. In that way what you say Julie is true; that hope of eternal youth keeps people coming back for more just like plastic surgery or hair transplants. Although, I’d bet money plastic surgeons have a better chance at correcting their middle aged patient’s appearances than reproductive endocrinologists do at correcting their middle aged patient’s sterility or fertility problems.

  3. There is another problem that I don’t think these women touch upon which is that even when it is impossible to correct sterility or fertility in their patients the doctors don’t stop marketing to them. When they can’t correct their patients problems as doctors they don’t want to loose them as customers of their business so they then try to get them to pay for other people’s fertility treatments if they can promise that they’ll get to keep the resulting babies. They go after people like “what you really want is a baby right? Does it really have to be your baby? Couldn’t you love anybody’s baby? Genetics does not make a woman a mother or a man a father it’s nurture, right? So wouldn’t you be willing to pay me to do some fertility treatments on other people if you got to keep their baby? ” “Here, we will harvest and store other men’s sperm for you and we’ll even help him inseminate you by doing it for him with a turkey baster in our office, you’ll pay for all that right? If you get to keep his baby without him being around? It will be almost just as good as having your partner’s baby you can pretend its his/hers and nobody needs to know”. Substitute egg for sperm and you have the same sale only there its a little worse because they’ve begun lying and saying that pregnancy will make the baby a biological child of the pregnant woman even if the embryo is not really hers. That is enormously irresponsible of doctors and goes against the ASRM definition of biological mother and I’ve complained to a couple of medical boards on a couple of docs who need to curtail their advertising claims of biological motherhood to infertile women pregnant with an egg donor’s baby. It’s cruel to let women think they will be the biological mother in those circumstances. They are not at all prepared for the reality they are entering into.

  4. “After all, people who are infertile can raise children and become parents, whether via adoption or via third-party reproduction avenues. So it’s not that you miss your chance to be a parent.”

    This is not true — if one wants to parent a child younger then the age of 4, one needs resources. Depending on your issues, you may need up to 35K. But for many people, even a couple of hundred dollars is out of reach. If that person cannot procreate, she is out of luck.

    And although I do not particularly enjoy young children, I understand that a great many people want to raise and form the attachment bond with infants and toddlers. It is a real loss, and it ought to be respected as such.

    And there is a very real access issue to the experience of parenting for people who are of modest and very little means. Adopting through foster care requires resources, which very low income people to not have. (home studies, legal fees, ect.) Tax benefits are of no use to people who do not make enough money to pay taxes.

    I should also mention that there are a large number of people who are not organized (or literate) to the point where can navigate foster care to adoption. And, of course, they excluded from the pay-to-play U.S. medical system and even the entry fees of international or domestic infant/toddler adoption. But the social costs of these engagements should not be dismissed. People must have a number of non-economic resources to become a parent when infertile. A certain amount of education, talent at navigating bureaucracy, and cultural and social capitol, is required.

    Recall the people in New Orleans who did not leave the city before hurricane Katrina due to the lack of a automobile, gas money, or money for a bus ticket out. If a person of that level of resources is infertile — how easy is it to become a parent? And is this economic justice? Is this right? That parenthood is determined along the ability of people to access economic, social and legal capitol?

    I find it horrifying that economic resources are so prominent in determining parenthood — both for women who feel the need to relinquish children due to insufficient economic support (or even medical bills!), and for those infertile people who don’t have the resources to become parents.

    There is a very real access/ economic justice issue in the ability to parent. This plays out in two ways: some people feel that they must relinquish custody and parental rights for economic reasons. Other people do not have the ability to parent for physical reasons and do not have the economic resources and social knowledge to make it happen for themselves.

    • A note on sympathy:

      There was a facile “sympathy” of many towards the victims of Katrina. There was also a disturbing discourse of criticism: “Why didn’t those people leave?” “Why didn’t they just drive away?”

      The victim is blamed for his or her circumstances. The lack of economic and social resources is ignored. This rhetoric is prominent when infertility is discussed in the public sphere. To see what I’m talking about — read the comment section of any on-line newspaper article which discusses infertility.

    • I think that it should not cost people one cent to adopt because the alternative is that the child would become the ward of the state. People who adopt save the state hundreds of thousands of dollars over the course of the years a child is a minor. There should be no cost at all to adoptive parents. All court fees should be paid. The state should pay for all the home studies, legal fees all of it. There should be absolutely no such thing as a private adoption agency, not even ones that are run for charity. There need not be any attorneys even involved. There need not be any complicated legal agreements and there should not be any marketing to expectant mothers. Mothers should be allowed to select the people who they want to help raise their children certainly but the state should not allow them to relinquish to particular people with whom they have pre-existing arrangments unless a detailed investigation into their financial dealings and accounts has been undertaken by the state to ensure that the relinquishing parent did not receive gifts or aid and does not at any point in the future. Frankly they should agree to a life long open book policy on their finances to ensure that no gifts or services or anything is ever transfered between the adopting party and the relinquishing parents/their relatives/friends/associates/employers etc.

      • Tess i don’t believe it costs money to adopt through foster care; as a matter of fact you continue to get the foster care stipend for the first couple of years

        • I thought, at a minimum, they needed to do a home study & pay for court costs? I haven’t investigated myself, but I read something not too long ago that suggested a family couldn’t adopt a foster child because of the potential costs. (I got the impression the family was marginal, economically.)

          If there are truly no costs for adopting out of foster care, that is a very good thing. I would mention that even applying for reimbursements are problematic for economically marginal families, as they often cannot go into debt while they wait for the reimbursement. Many low income people do not even have bank accounts, much less credit cards.

          I am concerned about economic status being a preliminary hoop that people must jump over, even if they have shown themselves to possess excellent parenting skills. It would be wonderful to hear that the state is helping with foster care adoptions.

          • I think they do have to show that they won’t require welfare though. I think the idea is to find a family that won’t require the state’s assistance with any costs or one that has the best chance of not going on welfare like lots of assets that would have to be sold off before they would be so destitute as to file for welfare.

            It is interesting to consider the criteria we would use if it were our job to go out and find someone to raise a child to the age of 18. I think the worry with foster care is that the state provides money that has motivated people to sign up then they use very little of the money on the child and keep the rest for themselves. Maybe the criteria for fostering should be higher more like adopting.

            • “I think they do have to show that they won’t require welfare though.”

              I have not investigated, but I suspect local governments in industrialized countries are reluctant to place foster children with a families on welfare or experiencing unstable economic circumstances. Can people who collect disability take in foster children? I have no idea.

              “After all, people who are infertile can raise children and become parents, whether via adoption or via third-party reproduction avenues. So it’s not that you miss your chance to be a parent.”

              My central point is simply the following: There are many people who do not have the choice to parent and build families due to a mix of medical and economic factors.

              I am not restricting my point to babies/toddlers or genetic children, but include all circumstances, including older children who wish to be adopted living in foster care.

              • I have helped to reunite many families that lost a child to CPS and the lucky ones aged out of foster care without their rights ever being violated. Meaning they could have received their parents social security death benefits had one or both died before the age of 18. They never had their birth record modified so they still have all their legal kinship rights fully intact and so do their relatives regardless whether or not their parents authority to make decisions on their behalf was terminated. They are still their legal parents. This is something Julie over looks time and time again and has never addressed I think she is afraid of admitting that it is possible to be a legally recognized parent without any authority over your child and without any psychological bond.

                Those who age out of foster care can be found by their family and they can also find their family because their parents are named on their birth records and this allows them copies of vital records and gives them something to base a search on. If your relative is adopted out of your family you don’t have a right to their amended certificate to know what their new name is or who their adopters are. If you are adopted out of your family your birth record now implies that you are a member of some other family not your own and you can’t get copies of vital records in your own family anymore. You can’t inherit you can’t help siblings immigrate, you can’t claim them on your tax returns, nothing. At least you can do everything except immigrate when you are someone’s legal step child without loosing rights in your family but not if you are adopted.

                So it is really nice to see reunions where not only are they mother and child or father and child or siblings but the law recognizes their relationship as being real like it should.

                Adoption would not be so bad as an additive family but not as a replacement family. All we would have to do is record the adoption as an adoption instead of as a birth.

    • Being honest, I don’t see what the problem is. People who don’t have the resources to parent have a reduced ability to become parents. That seems desirable to me: as it stands, their lack of resources is a burden and potential harm for them alone, whereas if they were to become parents their lack of resources would be a burden and potential harm for a second person (the child) as well as a greater burden and potential harm for themselves (since the resources would be split among two people). So were they to adopt or receive fertility treatments, that would create a situation worse than the status quo.

    • Try well over $35K for surrogacy and/or some adoptions or donor eggs, multiple IVFs, etc. By the time our son was born, we had spent a lot more than $35K to get him here. And we were fortunate to be able to do so.

  5. This is basically a “what came first, the chicken or the egg?” question. Did being unable to have biological children feel like a great loss to the majority of people, and so society adopted the view of the majority who experienced that, or is it the other way around? If it were as you wish, we might have the opposite situation, people who feel deep grief at being unable to have a biological child and who are told to shut up and not care because they can just adopt or use a donor.

    • great point. it’s important to strike a balance being senstive to people’s pain while not implicitly demanding that everyone feel it

  6. We need to respect people’s right to be fertile and healthy and not cavalierly dismiss infertility as something that doesn’t matter, since they can adopt or use someone else’s fertility and have someone else’s kids. People have a right to procreate and that means to be fertile and use their own gametes along with their spouse’s own gametes. There is an argument that there is a right to homologous IVF and other techniques that help a married couple combine their gametes, but I’m not sure, as technically the right is only to be healthy and have sexual intercourse with your spouse. But there is no right to use third party gametes, in fact it violates the rights of the child to be raised by his or her own parents. There is also not really a right to adopt a child, whereby one can demand to be given a child to control. Heck there is not even a right to parent your own child, it is an obligation and a privilege that can be taken away if it is in the child’s best interest. But there sure is a right to be fertile and marry and have sex and procreate with your spouse, that can’t be taken away for any reason.

    • How can people who are infertile have a right to fertility? That’s saying they have a right to do something their body’s incapable of doing, which doesn’t make sense to me.

      • I mean if there is something they can do to try to be fertile and reproduce with their spouse using their own egg and sperm, they have a right to try to do that, it’s part of health care. And it means we should protect people from things that cause infertility and promote practices that prevent people from becoming infertile. It means we shouldn’t cavalierly dismiss infertility as no big deal and not something anyone should complain about, because they can “still be parents” – no they can’t, not in the way that they have a right to be parents.

      • Well it is an excellent point and very simple too. It is so hard to hear people describe their perceived ‘right to reproduce with donor gametes’ because of course nobody has a right to reproduce another person’s body. Donor’s are people and if anyone is exercising their right to reproduce its them and the people who are reproducing and making offspring with them – not infertile or sterile people who just want to take and raise their kids without interference. It’s crazy to think that anyone could even say that they conceived a child with donated gametes, they conceived a child with a donor who is a real live person who had to actually want to create their offspring with strangers and who did not mind the idea of not taking care of them personally.

        • What’s an excellent point? Who are you addressing? Do you think I was saying that people have a ‘right to reproduce with donor gametes’? I sure hope not.

          There’s no right to reproduce using donor gametes, nor does the donor have a right to reproduce that way. Even married couples don’t have a right to use third party donor gametes. There is no “right to reproduce” only a right to be healthy and fertile, marry and have sex, and maybe a baby will be born, or maybe not. There is no right to a baby, and we weren’t talking about a “right to reproduce” anyway, I was saying that people have a right to be fertile and have natural children, as in to not be sterilized or forced to use better gametes.

          • excellent point that infertile people dont have a right to be fertile. people have a right to be who they are and to do what they are capable of

            • People DO have a right to be fertile, even if at the moment they are infertile for some reason. If they need to quit smoking pot or wear looser underwear or take some medication or have a cyst removed, they have a right to do that and become fertile. They have a right to restore their bodies to health and fertility. It might not work, but they have a right to try. And people have a right to stay fertile if they are not infertile, and not have their fertility derisively dismissed as a useless trivial extra that they do not even have a right to keep.

              You seem to think that a right to be fertile means a right to use third party gametes or someone else’s fertility, which is certainly not what I am saying, but strangely it is what you say, so I don’t get what you are objecting to. You should just admit there is no right to purchase third party gametes. Don’t worry, there will still be work for you for a long time.

              • What? Who me? Heck no! Logic demands that people’s obligations and rights are personal and individual in nature. You are expected to meet your obligations and other people will have a right to rely upon you meeting your obligations, but they cannot meet your obligations for you or force you to meet your obligations. They just have legal recourse if they have a right to rely upon you to do something and you fail to do it.

                Your right to vote is yours, nobody else can exercise your right to vote. They can influence you to vote a certain way, and then inadvertently get what they want, but it is still your vote, not theirs. They have their right and their vote. Same thing with having offspring because that is what this is really all about, not fertility. People have a right to have offspring. Some people will have them and others wont. Nobody can have offspring for you. They can influence you to have offspring and then inadvertently achieve their goal of your offspring existing, but they are still your offspring, not theirs.

                Your obligation to raise your offspring is yours and nobody else’s. Your offspring have a right to rely upon you to raise them and nobody else. You can try to offload your obligation by convincing someone else to perform your obligations for you but they will never be their obligation to raise, not really.

                • OK, but please explain how that relates to the point I was making, about people having a right to be fertile. You seem to think I am saying that people have a right to have children provided to them, or a right to other people’s gametes, or that people don’t have an obligation to support their offspring.

  7. Infertility is like many other non-lethal medical conditions.

    Scar tissue in the testes, uterus and tubes; immunity disorders; testicular vascular growth; cystic ovaries; uterine fibroids — these are all medical diseases and disorders which can be treated by medicine. Yes, infertility is a non-lethal condition, which is not dissimilar to many bodily disorders. But it would not be accurate to say it cannot also be physically painful (fibroids, endometriosis, polycystic ovary syndrome).

    In terms of medical conditions, trauma is associated with the sudden and unexpected lack of control over bodily function.

    A 60 year old woman is most likely not traumatized by the inability to conceive children. She has not planned her life around the ability to conceive children at 60. In contrast, a 30 year old woman is likely to be traumatized by the condition of infertility, particularly if she does not expect the condition.

    Slow hair loss is much less traumatic then one’s hair falling out with no warning. Waking up with no hair would be much more upsetting then a slow loss. The slow progression of a condition allows people to adjust to bodily disease and disability. Loss of fertility is almost always unexpected and a surprise. There is often no prior warning before attempting to grow the family unit.

    Ceasing fertility treatments may be one way to re-assert control over the loss of expected bodily function. For others, ART may be a way to adjust psychologically or successfully conceive a child.

  8. I’m getting ready to have my second surgery for endometriosis (one of the causes of my infertility) next week. Believe me, it is definitely painful and has repercussions for my health in areas other than fertility.

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