A Tale of a Designer Baby and Distributive Injustice

Melissa and Brad’s story is a heart wrenching one. Having to sell the family car in order to have a healthy baby.

From the government’s perspective, this is a bizarre situation. The care of a baby born with cystic fibrosis can cost over half a million dollars or more. Melissa and Brad both saved the government, and all of us, quite a lot, perhaps over half a million dollars. Yet they had to spend tens of thousands of dollars. They have, in effect, donated several hundred thousand dollars to the Australian public. Thanks Melissa and Brad.

This situation is profoundly immoral. People should have children born without disabling genetic disorders and they should be given support and encouragement to do so. If someone said to a person having IVF, “ We have two viable embryos, one is healthy and the other has a major disease. Would you like us to flip a coin, choose the healthy one or choose the one with the disease?” What should you do? What is the right thing to do?

The answer is obvious: choose the healthy one, the one with prospect of the best life. I have argued that other genes besides disease genes make a difference to how our lives go, and the same principles should be provided to any genes that makes a contribution to how well a child’s life goes – the so called obligation ot have the “best child.”

But that situation is a long way from where we are now. We can basically only test for diseases. And people are “free” to that. But they are not really free in the positive sense because they have to pay large amounts of money. It would be outrageous in Australia if a person covered by medicare was out of pocket tens of thousands of dollars for medical treatment and had to sell his car to pay. But this is what happened to Melissa and Brad.

The most important thing I found in this SBS Insight programme on Designer Babies is the outrageous situation that couples have to pay for genetic diagnosis in an attempt to have a healthy baby, which is what they should be doing, and which imposes the least costs

I have long defended freedom in reproduction, including the freedom to select the sex of one’s baby. This includes the freedom to choose not to have genetic testing and even the freedom to use technology to select a baby with a disability. But this should not stop us trying to encourage people to have healthier children with fewer genetic limitations. And it certainly requires that we remove disincentives to having children with the best prospects of the best life.

It is unethical to make people pay to have IVF and PGD to have a child free of genetic disorder. The government should revise its medicare rebates scheme for IVF and PGD for the promotion of health. It is an unjust allocation of health care resources to make people pay to have health children. It is distributive injustice.

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3 Responses to A Tale of a Designer Baby and Distributive Injustice

  • Khalid Jan says:

    Does it really make a difference from which womb a human being comes from? For those who wish to have children, and somehow they cannot, there are millions of children wondering in the world that desperately need a home. Let those who desire to have a child, adopt one or more, raise and educate them to be good, moral and contributing citizens.

  • Elselijn Kingma says:

    ” It is unethical to make people pay to have IVF and PGD to have a child free of genetic disorder.” — not necessarily. If the argument is that having a child with the disorder costs society more than paying for IVF/PGD, then surely this depends on what the counterfactuals are, and the costs involved. Melinda and Brad had trouble conceiving as it was – had they not had IVF they would have had no kids, or perhaps adopted one of the many children in need of a loving home. That, surely, was the cheapest option for society.

    On the argument forwarded it is only imperative for society to pay for IVF/PGD if people otherwise would have children the lottery way, and would not test and abort. At policy level, it is only worth paying for IVF/PGD if the amount of disabled children born otherwise, times the social cost of their care, weighs up against the costs of providing IVF/PGD to the whole group of possible parents. How that equation works out for different conditions in different societies is surely an empirical matter.

    That is not to say there may not be other arguments to fund IVF and/or PGD.

  • John Scott says:

    Khalid Jan and Elselijn Kingma suggest parents, such as Brad and Melissa, have the option of adopting a child and that because this option involves no extra costs to the state that the state has no duty to pay for IVF for such parents. However it seems many of such couples would prefer a child of their own using IVF with PGD rather than an adopted child. If the state is to pay for IVF for such couples then they must be able to give some reasons for this preference.

    Whilst intuitively I feel Brad and Melissa’s preference is justified it is by no means easy to supply reasons to back my intuition. I will try give some reasons most of which fail. Firstly parents might want to be biological parents as opposed to adoptive parents simply because they believe they will have a closer bond with their children due to this bond being unique. Adopted children have both biological and adoptive parents. Many adopted children feel the need later in life to seek their biological parents. I would reject this reason because whilst adoption may later weaken a child’s bond with his adoptive parents I see no reason why it should weaken the parent’s bond with child. A second reason why mothers might want to be biological mothers is that they believe carrying their children will increase the maternal bond. I would reject this second reason. Let us assume such a couple in Brad and Melissa’s position could have a child with donated gametes and that the woman involved could gestate the child. I would suggest such a couple would still prefer IVF with PGD. A third reason might be that evolution designed us to care more for our genetic children than any children we adopt. Fairy tales abound with tales of wicked step parents. This may indeed be a good reason but at the moment there seems to be insufficient evidence to back it up.

    One last reason why parents might care about, love their genetic children more than any children they adopt is that they believe they will share more common interests. It might be objected that parents and children come to share interests simply by family living. A child’s interests are a product of his upbringing. I agree a child’s interests are partly a product of her upbringing but they are also partly influenced by her genes. A large part of someone’s personality is inherited. Actively loving someone means sharing her interests, if I have no concern for her interests I simply don’t love her. It is easier to share interests if these are interests I already possess. Some might think this reason trivial but love central to parenting. Whether this reason is sufficient to justify the state paying for IVF with PGD for parents like Brad and Melissa I’m not sure. For a more detailed account see woolerscottus .

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