A world where only the perfect are welcome

Julian Savulescu’s quality control crusade for "top tots" (Herald Sun, June 7, 2005) leads us to a dangerous place. Let’s think about if we really want him take us there. The Savulescu techno-fix for better babies sets the scene for a society where those with the best genetic makeup are valued and privileged over those considered genetically flawed. Babies seen as muddying the gene pool will be excised from the mainland of humanity, bred out of existence. Many will be left behind in the race to genetic perfection.

People will be categorised and sorted: those who line up behind the young professor’s intelligent, clean cut, tight pecs, no-genetic-flaws image, and the poorer, weaker, unproductive and dependent relegated somewhere else (perhaps where they can’t be seen).

Savulescu may wish to invent a divide between the old eugenics and the new “nice” eugenics, but both are underpinned by a belief that there is an unacceptable way of being human. Biotech commentator Jeremy Rifkin says new scientific discoveries now make possible the kind of eugenics society that earlier eugenics reformers could have only dreamed of achieving. It doesn’t matter how Savulescu dresses it up: custom-designing our kids comes from thinking certain people are better than others.

Savulescu says not embracing genetic manipulation consigns the next generation to “... the ball and chain of our squeamishness and irrationality”.

But it’s reasonable to ask, if we believe everything can be fixed, that we can discard all that is imperfect, what does this say about the less able-bodied?

These are some of the issues considered in my forthcoming book, Defiant Birth: Women Who Resist Medical Eugenics. Defiant Birth comprises the stories of women who wouldn’t join the quest for blue ribbon babies - women whose babies were judged imperfect - and disabled women judged unworthy of child bearing. All of them were outside Savulescu’s preferred selective breeding model. Terrible pressure was applied to these women not to let their children see the light of day. They were considered genetic outlaws for going against doctors’ instructions.

Anne Godfrey of Queensland says when her unborn child was diagnosed with Down Syndrome, the doctor told her, “It’ll only be a pet”. (It turned out her son did not have the condition.) Melbourne woman Leisa Whittaker, who has dwarfism, recounted: “The specialist offered us an abortion. He asked us to think about whether we wanted to bring another dwarf baby into the world. It was something I hadn’t even thought of. Why would we not want her? Why would the world not accept our child?”

Defiant Birth confronts the medical and social aversion to genetically different babies. Its contributors challenge the impersonal technologies of quality control, refusing to allow themselves to be banished to the bottom of some genetic hierarchy. They ignored IVF expert Robert Edwards, who says it’s a sin not to consider the quality of a child to be born and geneticist Margery Shaw, who would send them into reproductive quarantine because society cannot allow parents to have defective children.

Savulescu says the old eugenics was bad because it aimed to benefit the state. But today’s cost-benefit argument in which the abortion of a baby with Down Syndrome becomes a bargain has great spin–offs for government coffers. Why should the State care for babies who shouldn’t have been born in the first place? Families with disabled children will tell you what a struggle it is now to find adequate resources and care. And who’s to judge what’s perfect? The range of what is unacceptable has already broadened. Some Australian doctors admit performing abortions at seven months gestation for correctible conditions. A Melbourne doctor injected poison into the heart of a 32-week unborn baby girl with suspected dwarfism.

Pre-implantation diagnosis is used to screen out embryos of the wrong sex. Many parents describe their babies with disabilities as providing them with a transformative experience. Eradicating imperfect babies undermines our tolerance of difference and care for those more vulnerable. Instead of this fetishism about genes, what about more money towards better nutrition programs for women and early childhood programs which would benefit far more babies?

These technologies are changing the whole meaning of what it is to be human. Making babies to conform to a specific model of perfection will only lead to the erosion of empathy for those deemed imperfect.