February 01, 2008

Parents sue over baby manufacturing defect

Imagine if one day, your parents told you that if they had known that you'd be born with a certain defect that you have, then they would rather have never conceived you at all. They would have adopted or just not had children.

And it's not because your defect has made you a serial killer or because you are a psychopath, dangerous or evil to society or to themselves. It's only because they didn't want to be burdened with the medical expenses that your defect brings, and possibly also because they think your life may become too full of suffering (for you - or for them?) and you may die young - and, it seems, they would only have wanted a child that lives to old age.

And how would you feel, additionally, if the same defect for which they would have rejected you and ended your life in a Petri dish, is the same defect that your mother actually has, and which she has lived with for many years even as she married and had children (like you)?

This is what an Australian couple is alleging, in a lawsuit where they are suing their IVF clinic for implanting them with the wrong embryo. The embryo happened to have the cancer gene that the parents commissioned to be screened out. The clinic had created 8 embryos. 6 were killed on the spot, while two were implanted. Only one made it through to birth. But oops - three months after the baby's birth, the parents found out that their son had the cancer gene after all!

So of course, like proper dissatisfied shoppers, they stormed Customer Service and sued. They want money for emotional trauma and they want money for the medical expenses of raising their new son, whom they allege they would never have had if the doctors hadn't assured them that he would be free of the cancer gene.

Away with the old; in with the new. In the days of yore, parents used to love and be thankful for any child that was born to them. They did not have demands of a clean bill of health or anything else for that child. A child was God's gift, a free and great miracle. Parents believed that each child had its own value, and that if their child had a disability then it was still equally valuable and had something to teach them about love.

Today, some parents are no longer content with receiving the flawed and damaged gifts of nature. Parents now pre-select their children in the lab dish. They will no longer accept just any child; they want the most perfect child that they can get. When their "order" gets messed up and is filled incorrectly, and another child is born as a result, they have "emotional trauma". The child has created great and grievous "damages"solely by being born less perfect than its parents demanded. Parents are enraged at being "stuck" with an inferior product that they did not order. They are appalled that now, they are supposed to pour their love and attention, their finances and their time, onto this inferior product that was never supposed to exist. What a travesty of justice! Someone certainly has to pay the price.

But regardless of how much the clinic pays, someone else will pay the most. That is the child itself. The boy, once he realizes how conditional the love of his parents is, will pay the most. The parents may think that the cancer gene will ruin their child's life. In fact, it is their own inability to unconditionally love their child and rejoice at his birth that could very well damage him psychologically beyond anything else.


Anonymous said...

Actually, clinics don't "implant" embryos, they transfer them to a woman's uterus. The embryo has to implant on its own. Since this is an integral part of what makes an IVF fail or suceed and you seem to have such strong opinions about IVF in general, I'd have thought you'd be familiar with the process. Next time check your facts before you write.

Veronica Thomas said...

Hi anonymous - correct, of course I am aware of this nuance and thank you for pointing it out. I don't think it affects the rest of my post - basically, by "transferring" two embryos rather than one, the doc obviously seriously magnified the chances of a twin pregnancy.

MLO said...

Actually, the main reason for people choosing to select embryos is to prevent their future children from suffering. Have you ever worked with people dying from cancer? I have. It is not pretty. If there was any way to prevent another person from dying from multiple myeloma, I would be all for it - even embryo selection.

Secondly, historically, people did kill disabled infants and children because they were too much of a burden. This happened everywhere. A clump of cells is not a child. It is better to determine that prior to creating a child (as in it is born) than afterwards. And, the authorities did turn a blind eye for the most part.

Even today, the children most often given up after birth are those with hard to treat or expensive disorders. There is no relation between biological connections and health of the family. Anyone who has spent any time working in social services knows that.

Veronica Thomas said...

Hi mlo,

Thanks for your comment. As far as your claims that (a) the children that parents most often give up after birth are disabled, and (b) historically, there was a practice of parents killing their disabled children, I would be very interested to know some serious academic references for these claims.

As far as your assertion that a child is not a child until it is born, and that before this point it is a "clumpf of cells," that is an old argument from 40 years ago, which any contemporary high school science textbook proves to be false.

Science and technology have since shown us that the embryo is a fully living, developing, self-contained organism (and not merely a part of the mother). It has its own, unique DNA that is distinct from the mother's.

If you want to know what unborn children look like, and how quickly they develop, visit any maternity website. So many websites now offer detailed information on the baby's in-utero development. They even have incredible ultrasound pictures - an unborn baby is far more than just a "clump of cells."

Finally, to get to your first point. It may well be that many parents use PGD to prevent their future children from suffering. However, even if their motivation is "noble" in this way, the act is still completely misplaced.

Neither the parents, nor anyone else, can decide for someone else that their life would simply not be "worth living." The parents cannot know what positive things would come out of the life of their child, so they really can't properly balance the equation of "joy" vs. "suffering" for that child's life.

Yes, I do know people who have had cancer - and I know people who have died of cancer (breast cancer, brain tumors, intestinal cancer, etc.). Yes, these people suffer a great deal.

However, if you were to ask these people the question: "because of your present suffering with cancer, would you rather have never lived?" I wonder how many people would actually say yes to that.

Cancer causes a great deal of suffering, and even death. But even the people who suffer and die from cancer are often glad to have been alive. They have found joy, happiness and love from those around them. They have contributed a lot to the well-being of their families and friends, and have made a difference in the world.

So who are we to say that their suffering justifies their pre-birth extermination? No one, not even the parents, has enough information to make that choice for someone else.

Barely Sane said...

Once again, you have made incorrect assumptions about ART and PGD as a whole. Many couples suffer miscarriage after miscarriage in their quest to become parents. Many of those are caused by GENETIC factors. So why should those parents wait to see if a healthy embryo is ever created naturally when they have the ability to use PGD? Why should they be forced to endure numerous painful losses time and time again?

You mentioned "God's will" but let's be honest, if God didn't want us to use these technologies, he wouldn't have put them at our disposal in the first place. For arguments sake, God created man. He gave man the ability to learn and evolve. He gave man the tools with which to allow infertile couples the possibility of becoming parents. So why is ART any less God's will? And more to the point, why would He give me free will if He didn't want me to use it?

Having never suffered through a debilitating disease other than infertility, I can never fully understand where these parents are coming from. I can understand as a mother, not wanting to see my child suffer. And if I had the control to eliminate something that would cause major suffering to my child, I would do it in a heart beat.

Let's not forget, I'm sure the clinic was paid a tidy little sum of money to guarantee that these parents never had to watch their child endure such pain. Darn rights they should sue!

Veronica Thomas said...

Hi mlo,

First of all, the parents who used PGD to have a child without the cancer gene never claimed that they were doing it to prevent a miscarriage. In fact, in the end their son DID have the cancer gene - and yet, there was no miscarriage. The cancer gene does not cause miscarriage but simply means that the son will have a higher probability of developing some type of cancer later in life.

Most of the time, parents use PGD in order to screen out characteristics that they do not want in their children, not to prevent miscarriage. The parents usually want to screen out mental disabilities or predispositions to certain diseases. Some parents even use it as a form of sex selection.

I have no doubt that as technology progresses, parents will also use PGD to select traits like eye and hair color, height, athletic ability, etc. PGD has opened the open door to a whole new form of eugenics.

Yes, if I had control to eliminate suffering from my child's life, I would do so too. However, in this case, they are not just "eliminating suffering from their child's life." They are actually ELIMINATING THEIR CHILD'S LIFE in order to eliminate the suffering. Now, that is quite twisted.

As far as the money they paid to the clinic, and their outrage at not getting what they paid for - that's exactly what I'm talking about: the consumer mentality. The parents have turned into shoppers and their child has become the product. Where is the unconditional love and joy? Now the parents feel justified in their outrage at getting an inferior product, because after all, THEY PAID FOR BETTER, didn't they.

Veronica Thomas said...

Hi mlo,

About the argument that you bring up, that since we have these technologies , then God allowed us to have them, and so using them must be morally good - I already dealt with that argument once in an earlier entry: http://childrenhaverights-saynotoreprotech.blogspot.com/2007/02/god-thinks-its-moral-he-gave-me-baby.html

Basically, that argument is simply totally false and doesn't make sense.

To produce some examples: if God let us create the nuclear bomb, then I guess it's okay to use it? If God gave us the ability to destroy the environment, then I guess it must be okay to do that? If God gave us the instruments to kill other people, then I guess it must be okay to kill others?

Just because we have the technology to do something does NOT mean that it is good, or that we should do it.

Veronica Thomas said...

That earlier blog entry is February 23, 2007: "God gave me the baby so it must be really mine."

Anonymous said...

While I agree that it's awful for a couple to use PGD in a way to screen out an embryo that has the cancer gene that may or may turn into cancer, I just want to mention that of all the couples I know that used PGD, all used it as a way to make sure that the embryo didn't have a defect that would lead to a miscarriage. All of them. As a person whose gone through infertility and used IVF (with my eggs and my husband's sperm so you can rest easy), I know several couples that have used PGD (I did not as the only issue I had with getting pregnant was blocked fallopian tubes).

Veronica Thomas said...

Hi Anonymous,

Thanks for writing and reporting about your experience.

As far as using PGD to prevent a miscarriage, I sympathize with the parents who wish to prevent themselves further suffering in this way. I have actually gone through a miscarriage myself, so I know what pain that brings.

However, as much as I understand what the parents are going through, I still have to point out that they are preventing themselves from further pain AT THE EXPENSE OF their own children. Moreover, the temptation to do further screening is very high indeed. This is what I mean:

In PGD, multiple embryos are produced and only a select few are transferred into the woman. Some of the embryos are discarded because they were "defective" in the sense that they would have been miscarried anyway. But what if the batch of multiple embryos is ALL okay?

The couple doesn't want to transfer five, eight or more healthy embryos, and risk a dangerous pregnancy with multiples. So, if they have too many healthy embryos to choose from, they may randomly choose a couple to implant. However, the temptation is often there to do a bit of further screening: now that we have eight healthy embryos to choose from, how about we screen out the ones with "bad" genes that don't necessarily cause miscarriage, but which are undesirable? How about we screen for sex? From what I've read, even when couples do not start out intentionally using PGD as a form of sex selection, in the end they often DO make some kind of sex selection, simply because they CAN, and so why not? Why NOT give further specifications for how you want your child to be, when you have eight embryos to choose from and you simply MUST narrow it down somehow - why leave it to random chance?

The rest of the healthy embryos - the UNchosen ones - are then typically either frozen (often indefinitely) or discarded, or (rarely) donated for scientific research. In effect, it is those unused embryos - living, developing, normal human beings - who are denied their lives. They are the ones paying the heavy price. It is at their expense that the couple is avoiding a miscarriage and having a healthy baby.