Are “designer baby” fears actually prolonging children’s suffering?

Paul Raven @ 23-03-2009

baby feetMedia hysteria about “designer babies” maintains ethical pressure on IVF genetic screening techniques and keeps them from becoming more widely used. Michael Le Page at New Scientist suggests IVF-PGD should in fact be mandatory, comparing a refusal to use the technique to the actions of parents who refuse medical treatment for their child on religious grounds:

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.

He goes on to point out that IVF-PGD can’t be used for ‘designing’ a child, and takes the view that if every life is a gamble, screening for inheritable diseases is a way of stacking the deck in your favour… and in the child’s.

Of course, that view is contrary to the “pro-life” philosophy, but even someone more moderate than that might see Le Page’s approach as callous. And there’s the argument that it’s immoral to attempt to eradicate disability entirely; remember the deaf couples who use genetic screening to select in favour of a child with deafness? [image by lepiaf.geo]

What do you think – should we use science to engineer away our physical defects before they happen, or to make life as comfortable as possible for those afflicted with them?

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3 Responses to “Are “designer baby” fears actually prolonging children’s suffering?”

  1. Khannea says:

    I think children from parents who are born with genetic disabilities, after their parents had the money and opportunity to cure these disabilities should hold their parents accountable and litigate for damages.

    Hell, I think these children could even hold the state accountable for serious neglect if the state did nothing to force their parents to treat any serious genetic ailments.

    Let’s paint a picture that makes more sense to people.

    What if parents live in a place that is infested with a fungus. This particular fungus has very little effect on them – but it invariably causes paralysis on children growing up in that environment. Now what if the parents, upon getting pregnant, and being informed of the dangers of the fungus, had the opportunity to move and were to bothered to move. The child would be born, become paralysed and suffer severe disability because the parents were too bothered to move to a safer environment.

    The child could present this as severe endangerment, abuse or neglect to any reasonable court.

    Worse, if the state did nothing to protect the interests of the infant, the child could present the same argument to the court and sue the state for neglect. The state arguably has an obligation to protect civilians from the callous disinterest of other civilians.

    The problem is, if we implement this line of reasoning, any child can hold parents in contempt if the parents can be argued to have smoked during pregnancy, used drugs, lived in a low-education neighbourhood, didn’t eat adequate food with proper nutritional requirements, andsoforth.

    Right now the stupidity, ignorance, callous lackluster conceit of millions is a plausible defense. But very soon this should no longer be – not when a small handheld device that can tell any parent whatever he or she needs to do to maximize the chances on success with any pregnancy.

    Personally – I am all for this. And in that world, I would not have been born, or I would have been born without the chronic incapaciting problems I face. I think holding my retard parents accountable would be a bit like beating a dead horse – they were clueless. But that defense would not hold up if these same parents would be likely live to several centuries, and had decent educations and technological resources.

    Likewise, the state and legal system should prepare for these questions, and should prepare to be held accountable. As soon as you start thinking about it the economic damages, the personal anguish, the trauma, the indignities involved FAR outweight anything that is currently treatable by litigation in the US or EU.

    http://law.freeadvice.com/litigation/civil_law_suits/damages_type.htm

    http://www.lawsuit.no/gay.html

  2. Tom James says:

    @Khannea

    I think children from parents who are born with genetic disabilities, after their parents had the money and opportunity to cure these disabilities should hold their parents accountable and litigate for damages.

    Yowzers. That’s an anthropic nightmare! After all, screening entails that you select embryos that don’t possess these genetic traits.

    If a child is born with a genetic disability and their parents didn’t screen then they owe their lives to the fact their parents didn’t screen!

    But if they did screen then the child would never have been born in the first place.

    But I agree with the general point that certain kinds of genetic diseases should be avoided as much as possible.

  3. Evil Rocks says:

    This is like self-imposed gene-pool manipulation. Does anyone who actually understands genetics know whether this kind of screening will have any effect on carrier rates in the general population over >200 years?