Designer Babies

The controversy over designer babies was re-ignited on the 20th Dec. 02 when the High Court ruled against a couple who wanted to create a sibling to provide a transplant for their terminally ill child. Though this couple have every legal right to naturally produce another child between them, they now have no right for a future child to be medically altered so that it would be a biological aid to their present child who is currently suffering from a rare disease. To get the genetic match required, the parents now have to rely on the slim chance of non-medical reproduction, or on inferior treatment, instead of being able to use the medical techniques available to them.

Another couple are to get help from the United States so they can create a 'designer baby' to save the life of their seriously-ill son.

Is this ethical?

No. They should never have been put in a position where they had to leave this country to go to the US. The decision against them is unethical. Their choice to go to the US is a feasible remaining option.

But aren’t they going to be bringing a new life in the world not because they will love and cherish this new life, but so they can use it to save the life of another?

No. This is an assumption. No-where in the news report, or reports at The Independant and The Guardian and The Observer do the parents say that the sole purpose of the proposed "designer baby" is just to ease the pain of their son Charlie Whitaker. Perhaps the parents want another child? The "tissue-typing" IVF technique would have been a practical measure so that they could have had a child *and* eased the agony of their critically ill son. People often choose to reproduce so as to enrich their lives and those of the children they already have - this case is no different. I’m sure any new child would be most loved considering what it could do for the family. There is no evidence that the Whitaker’s attitude is purely instrumental and without care.

Assumptions as to their motives and emotional capacity aside, the main objections to the procedure seem to be:

"in the Whitakers' case, Charlie's disorder is "sporadic," meaning the chances of his parents having another baby with the disease is no greater than with the general public - between five and seven per million live births.

So there is no reason to believe Mrs Whitaker's embryos would again hold the genetic disorder affecting Charlie."

This is not an ethical objection, but a technical one. The law on human fertilisation and embryology (the 1990 Human Fertilisation and Embryology Act) states that this procedure (called pre-implantation genetic diagnosis, PGD) is normally done for couples when one or both of whom carry a genetic disorder and the chances of passing the disorder on are great.

This objection illustrates an inflexible and dogmatic attitude to the law, not account for a couples motives or situation.

There is an attempt to underpin this law with an ethical element, which serves as the other main objection to PGD in this case. The procedure the Whitakers want to carry out would not be to check whether the embryos carried a genetic disorder, but to see whether the embryo was a match for Charlie. It can be done, so what’s the problem?

The HFEA has argued that the procedure would mean selecting one life, or embryo, which matches Charlie's tissue type, over another life, another embryo, which does not. This is their main ethical objection.

But they also have a political motive to deny this treatment.

"The HFEA was criticised by MP's in July for granting a licence to create a so called 'designer baby' to another couple in similar circumstances."

The final sicken blow reads: "The organisation claims that the public is happy with the procedure of checking embryos to ensure they are free of genetic disorders, but does not support using the procedure to check embryos for other reasons, including tissue typing."

What have the uninformed public got to do with the decisions two people make about the reproductive technologies they employ (and perhaps pay for)?

The main ethical objection rests on valuing a bunch of embryos over the life of a 3 year old, currently in agony, and his tormented parents. So what if one embryo is chosen over others which are discarded? Superfluous embryos are discarded during many different types of IVF treatment, including "test-tube" conception and PGD. Regarding the use and value of embryos, this case is no difference. They stopped the procedure due to a legal technicality.

As to the value of embryos - this would depend on which side of the abortion debate you sit on. As a pro-choice supporter, I see the value of social human life (those like Charlie and his parents - ie: *persons*) to be greater than the collection of characterless, thoughtless and barely sensing cells we call embryos.

The Whitakers made a decision that they value their son above a bunch of embryo’s. The valuation clashed with a legal technicality and the political climate. Just because they value embryos less than the grown child they love, it doesn’t mean they will not value any baby that is born out of the procedure they want implemented.

What is wrong with designer babies?

Improving the health of babies is good for them and whoever pays for medical costs. Eliminating genetic disorders and improving the intelligence of babies would be good for everyone generally. The only possible problems could be a class schism whereby those rich enough could afford designed babies, but I'm not greatly concerned by repro. cloning resulting in separate "races", or rather classes, of genetic "haves" and "havenots". We already have that situation with regards to food, lifestyle, health care and medicine (though that is not justification for inequality getting worse, just an observation). Also, if new generations of uberkinder (for want of a better term!) are healthier, there is more money to go to the unhealthy, ungenetically modified. If they are smarter, they should speed technological and political progress which should benefit all. Finally, those who haven't received genetic manipulation don't permanently lose out. Technological advances in augmentation of the senses, limb, tissue, bone and organ replacement (using therapeutic cloning), medical nanobots and genetically tailored drugs could level the field. Naturally, if any uberkinder reproduce with genetically unmodified people, their children will probably get benefits of gene-mod. for free.

Also see this discussion and this article at reason.com.

There are problems with designing babies for reasons other than health benefits - there was the case of deaf parents ensuring that their child would also be deaf (not done through genetic modification, I should observe, but it is clearly a related topic), viewing deafness as being simply indicative of minority group status rather than an impairment.

This idea of "minority" makes some sense. Many disabled people have never experienced life in any other way than as disabled, and that disability has lent a character to their lives that they aren't necessarily willing to change, and which they find valuable. If you ask someone with a disability whether it would have be best had they never been born, they'd probably say no. This is the reason why some parents of Downs children oppose aborting Downs babies - disabled lives can still be rich and valuable (IMO, any woman's reason is a good reason for abortion).

Viewing disability as another (political) minority group makes sense in a climate of minority activism and pressure for rights/recognition. These deaf parents may well be able to navigate life just as well as we do, viewing it not as a disadvantage, but as a different way of perceiving.

This case may also be defensible on the grounds that deaf people will probably soon have access to implants which will recover any lost hearing (an beyond that, we may all have access to implants that augment hearing). Thus the parents decision is reversible if the child so wishes (or rather, can afford it!).

Other disabilities need to be viewed case by case. What of the parents who want their child to have spina-bifoda? How could this be defensible? I'm not sure it could. Perhaps disabilities can be ranked according to what they affect - the senses, the intellect etc, how much pain they might cause and whether the disability can be reversed or provided for...

That said, while I think we should be prepared for a great many similar cases, I also suspect that a possible outcome could be greater social homogenisation. As an example, if parents were given the ability to create designer babies then I think we can be certain that male homosexuality would be eradicated within two generations maxiumum (prejudiced parents are an obvious case, but I have no doubts that liberal parents would be concerned over potential discrimination and do the same).

However, I am suspicious that there is a "homosexual" gene. Social categories like sexuality and criminality are historical and ideological concepts, not purely biological. Even this counter-observation is problematic because it sets up a dichotomy between the social and bioloical that I believe is false. These two elements seem indissolubly intertwined, like a spiral, rather than a dualism... I doubt if homosexuality or criminality could be removed as easily as a gene can be. We'd have no Jean Genet without these "bad" genes! :-)

The same problem of homogenisation could be applied to those countries where paler, whiter skin is seen as a status symbol. Also consider how the biological sex ratio could be unbalanced (not that this matters for reproduction, or for love, or for sex, but rather as a political issue regarding gender).

Some parents in the American South begin grooming their children for beauty contests from a very early age and I can certainly see the prospect of genetically engineered Barbie dolls. Beauty is likely to be a major demand, perhaps more so than intelligence and certainly more likely to be a female's "gift".

Similarly, as genes associated with intelligence have been identified I can see disturbing possibilities; I recall John Wyndham noting that parents tend to have dual views on this; they want bright children but tend to feel alienated by children that are too bright. I wonder if the results might not be large numbers of children bright enough to be lawyers and doctors but a cap set above that.

All that said, political minorities may well design their babies as gay or black to ensure that their interests and concerns aren't suppressed by genetic removal. But what of the parents who want a facially deformed child in protest again the Western beauty aesthetic? Or the parents who want a hermaphrodite or asexual child so as to challenge our gender dualism? Can children be designed as a form of social/political protest or moulded by ideology/political loyalties? The deaf parents certainly wanted this. But also so do parents who want to avoid diseases, stupidity, ugliness etc etc.

Perhaps the decision should be informed by how the children are likely to feel about their augmentation. But then, children are usually terrible conformists....

Intuitively, who could have a problem with eliminating diseases, crippling disabilities and insanities? But what does one consider insanity/disease? Homosexuality once was considered as such...

Designer babies seem to be a cause celebre for the more gung ho strains of American libertarianism, which holds that as parents know what is best for their children they should make the decisions. Following Larkin, I tend to think that most parents screw their children up and genetics opens up a whole new way for them to do that..

But what are our options? The state?

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