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Destroying the Taboo Against Genetic Screening
Madeline Kara Neumann, age 11, died of diabetes because her parents prayed rather than taking her to doctors. Caleb Moorhead, age 6 months, died after his deeply religious vegan parents refused a simple vitamin injection to cure his malnutrition. The list of children killed by their parents' superstition or wilful ignorance is a long one.
Most people are rightly appalled by such cases. How can parents stand by and let their children die instead of doing all in their power to get the best medical care available?
Yet this is precisely what society is doing. We now have the ability to ensure that children are born free of any one of hundreds of serious genetic disorders, from cystic fibrosis to early-onset cancers. But children continue to be born with these diseases.
All would-be parents should be offered screening to alert them to any genetic disorders they risk passing on to their children. Those at risk should then be offered IVF with pre-implantation genetic diagnosis (IVF-PGD) to ensure any children are healthy.
Why isn't it happening? Because most people still regard attempts to influence which genes our children inherit as taboo. When a fertility clinic in Los Angeles recently offered would-be parents the chance to choose their child's eye colour, for instance, it provoked a storm of criticism that forced the clinic to reconsider
Such fears are misplaced: IVF-PGD is little use for creating designer babies. You cannot select for traits the parents don't have, and the scope for choosing specific traits is very limited. What IVF-PGD is good for is ensuring children do not end up with disastrous genetic disorders.
Nearly 150 years after Darwin unveiled his theory of evolution, we have yet to grasp one of its most unsettling implications: having diseased children is as natural as having healthy ones. Every new life is a gamble, an experiment with novel gene combinations that could be a brilliant success or a tragic failure.
Thanks to technology, we are no longer entirely at the mercy of this callous process. Rather than regarding this ability with suspicion, we should be celebrating it and encouraging its use. Instead, we continue to allow children be born with terrible diseases because of our collective ignorance and superstition. That makes us little better than the parents of Madeline and Caleb.
Michael Le Page is biology features editor at New Scientist