Designer Baby Breakthrough Can Identify 6000 Genetic Diseases

Ronald Bailey | June 20, 2006

British researchers have developed a new technique that allows them to test embryos for any of 6000 different genetic diseases before they are implanted. The technique, called pre-implantation genetic haplotyping, takes a single cell from an 8-cell embryo and amplifies its DNA by a million times.

Currently, there are a couple of hundred genetic tests that can be used to identify specific broken genes in embryos. With PGH physicians don't need to know what the specific genetic problem is beforehand. They take DNA samples from family members who are free of the specific disease and those who are afflicted. The beauty of PGH is that it can, by comparing embryonic DNA with DNA from family members who carry the broken gene and those who don't, identify the chromosomes in embryos that carry the disease-causing gene. Parents can then choose not to implant those embryos.

The researchers report that five couples have used PGH to have children who are free of the genetic diseases that have afflicted their families for generations. Naturally, such biotech progress provokes expressions of concern from some people who are worried about the advent of "designer babies." One interesting exchange on this topic was reported by the Australian ABC News:

[T]he new test has sparked questions about the morality of creating disease free embryos.

Simone Aspis is from the Council of Disabled People.

"It may start off being for people with terminal conditions, but then it will move on to other less significant conditions," she said.

"It sends out a signal that people are worth less than other people, it sends out a signal that actually disabled people will be better off not alive."

Ms Barnes [from Britain's Cystic Fibrosis Trust] defended the use of the technique.

"We not talking about here, blue eyes or good sportsman, or people who are good at music," she said.

"We are talking about essential bodily functions. To deny this to families I think would be a great tragedy."

Professor Braude [who helped develop PGH] is resolute on the ethical question of designer babies.

"It is a step to designer babies for those people who've got genetic disease," he said.

"And what we're designing, if you like, or selecting for, is a baby that's not going to die.

"That's what they come to us about. People come along who've had dead babies, they've had children who were severely handicapped and they've said, please is there something we can do to avoid this happening again?

'And what we do is not change the embryo in any way, but they've already got embryos, some of which are affected and some aren't, and we just select those that aren't affected."

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|6.20.06 @ 10:49AM|#

It sends out a signal that people are worth less than other people, it sends out a signal that actually disabled people will be better off not alive.

I can make a pretty solid libertarian pro-life argument, but the above makes no sense. A pre-implanted, 8-cell zygote is not a "person". 99% of a woman's eggs, and 99.99999999% of a man's sperm will never be used anyway, selecting away from the defective ones in advance does not strike me as eugenics or even a bad idea. You are still stuck with regression to the mean, given the parents I see walking around every day I seriously doubt we are headed towards a super-race.

MP|6.20.06 @ 10:52AM|#

"It sends out a signal that people are worth less than other people, it sends out a signal that actually disabled people will be better off not alive."

Is there a rational argument for why a disabled person would choose to be disabled? Selective breeding does not devalue those who are born with disabilties. If you are alive, you need to make the best of your life, and tackle all challenges that are thrown at you. A disabled person is not devalued because of their disability, they simply face a more challenging life.

MP|6.20.06 @ 10:55AM|#

I can make a pretty solid libertarian pro-life argument, but the above makes no sense.

Recall also that disability doesn't happen only at birth. Do these "disability boosters" think we should stop investing money in treatments for blindness (for example) brought on by disease or accidents?

Jennifer|6.20.06 @ 11:00AM|#

The medical community's continued use of things like casts and splints sends the hate-filled message that people with broken bones aren't as good as people whose bones are whole.

|6.20.06 @ 11:01AM|#

"Do these 'disability boosters' think we should stop investing money in treatments for blindness (for example) brought on by disease or accidents?"

I think the way they usually parse that out is to say that where blindness is genetic, then it is "part of who you are," i.e., an essential aspect of your being. Where it results from later exterior forces, then you are merely having blindness thrust upon you.

|6.20.06 @ 11:02AM|#

"Is there a rational argument for why a disabled person would choose to be disabled?"

Some deaf parents actually wish their children to be hearing-impaired, so they can remain part of "their world", or however they justify it. Far from rational, far from the child's choice, but this view does get sympathy from those not hearing-impaired.

|6.20.06 @ 11:11AM|#

It's [sic] is a puzzle why some people believe that it is more moral to require parents to submit to nature's random genetic draw than to allow them access to biomedical techniques that enable them ensure the health of the children they choose to have.

Such questions are probably outside the bounds of an objective conclusion. Basically all one can hope for is toleration for each viewpoint.

|6.20.06 @ 11:12AM|#

Some deaf parents actually wish their children to be hearing-impaired, so they can remain part of "their world", or however they justify it. Far from rational, far from the child's choice, but this view does get sympathy from those not hearing-impaired.

There was a similar case here in Germany a couple of years ago. I believe the deaf father's rationale was that, one, his daughter would be shut out from the rich culture that the deaf allegedly possess and that, two, hearing wasn't all it cracked up to be. Or so he had heard.

I'm sure there's a special circle of hell for people like that.

|6.20.06 @ 11:17AM|#

Swillfredo Pareto,

The statement probably assumes that a fertilized human egg (an embryo) is as much a person as you or I are. And of course there is no "right" or "wrong" answer regarding such a conclusion. From that perspective, it is a perfectly sensible statement.

|6.20.06 @ 11:18AM|#

"Such questions are probably outside the bounds of an objective conclusion."

Huh? If you're creating a new person and can easily increase their chances of lifelong health but choose not to how is this something to be tolerant of? Or am I missing the joke?

|6.20.06 @ 11:20AM|#

I've been reading too much Kant. :)

StupendousMan,

That sounds more like gene therapy than the sort of technology seen here.

|6.20.06 @ 11:25AM|#

An actual conversation with a bio-techno-phobe-child-rearing-control-freak (paraphrased):

(me)"If you could either: A) spend a year studying science, or B) take a pill that would guarantee the same amount of knowledge retained, what would you do?"

"Spend the year studying, of course."

"What if you retained nothing?"

"That's beside the point. A year spent studying will provide me with innumerable positives: better study habits, discipline, reading skills, comprehension, etc. . . time spent studying is not for naught."

"What if those 'skills' weren't acquired also? What if nothing was gained, and an entire year was wasted?"

"I seriously doubt that would happen."

"But it could."

"Yes, I suppose so, but seriously, it is highly unlikely."

"What if I took a pill that could instantly grant me all those peripheral skills acquired from studying? - reading comprehension, discpline, etc. . . "

"Look there's no benefit from NOT doing the work. The ends don't justify the means."

"But what if the work is entirely fruitless? Is it still worth something? A year spent, and nothing was gained, is more beneficial than 5 seconds spent taking a pill, with everything retained? At least digging holes, then filling them up again has some physical exercise associated with it."

"The ends don't justify the means."

"That saying only applies to 'means' that harm someone: you know, the Soviet system, 'we had to destroy the village in order to save it', harmful testing on humans, etc. . . That has no bearing here, because the 'means' (taking a pill), are harmless, and affect no one."

"But who gets this pill? I'm sure the poor and minorities will be excluded from your wonderful 'pill'"

"That's a lot of assumptions: cost, price, availibility, subsidy. Besides, that's a separate issue. I'd be happy to help those out who can't afford it. And that has nothing to do with my body, or for that matter, my child. It's my choice, you should have no say in this matter."

"So says you."

So ended my conversation with a techno-conservative on this (cripes I dunno what political side they are on), but "taking a pill" is sort of like choosing your genes: quick; harmless (when the science is fully matured); spares trouble, disease, and possiby death; yet opposed by those who are really just jealous.

And man, people have been watching way too many bad sci-fi movies on this.

|6.20.06 @ 11:27AM|#

"Or so he had heard."

Solitudinarian you are a sick, sick, funny man :)

|6.20.06 @ 11:38AM|#

"biomedical techniques that enable them ensure the health of the children they choose to have."

This is what I was responding to. But I don't really think it's an important distinction. We're building people it only makes sense to use the best tools.

|6.20.06 @ 11:45AM|#

I can see three objections to sufficiently advanced genetic tinkering; first, if the change makes people more satisfied with less satisfying conditions (if most of the serfs are happy, then the rest of the serfs are screwed); second, if the change has multiple effects (e.g. decreased chances of both creativity and schizophrenia); third, if when one person gets the change, that person is better off, but when all people get the change, all people are worse off (e.g. increased height, with moderate social advantages, and slight increases in food costs, clothing costs, back problems, etc.).

|6.20.06 @ 11:51AM|#

Somatic cell therapy. It should be possible to make changes to mature organisms, if fact this will probably happen first. So no one will be stuck with their parents choices. It kind of defeats the whole "we'll create a race of super people" hysterics.

fyodor|6.20.06 @ 11:51AM|#

"It sends out a signal that people are worth less than other people, it sends out a signal that actually disabled people will be better off not alive."

The medical community's continued use of things like casts and splints sends the hate-filled message that people with broken bones aren't as good as people whose bones are whole.

While there's significant similarities between the original statement and Jennifer's parody, there's one key difference, which is that the "therapy" in question is to eliminate embryos that don't measure up and thus assure the birth of an embryo that does. Why someone would see this difference as significant reminds me of a conversation I once had with a coworker.

Her: [fyodor], are you going to have children?

Me: Nope, don't want 'em.

Her: But [fyodor]! If your parents had taken the same attitude, you wouldn't be here!

Me: Yeah, but...I wouldn't know the difference, now would I?

Her: Well, I guess not, ha-ha...

This does go to basic issues of existence versus non-existence that kind of transcend our ability to really wrap our minds around.

But it doesn't really matter, cause the Luddites will lose in the end. All they can really do is annoy us with a lot of squawking in the meantime.

I guess I'm saying that I have a certain sympathy with this horror people have at the idea of never having existed, but it only goes so far, and beyond that I just shrug them off as examples of the weirdness of human psychology.

Rob|6.20.06 @ 12:04PM|#

It's is a puzzle why some people believe that it is more moral to require parents to submit to nature's random genetic draw than to allow them access to biomedical techniques that enable them ensure the health of the children they choose to have.

a puzzle, really? Eugenics hasn't really worked out well in the past, whether it's forced sterilization, 'one-child', or 'sex selection'. These types of advances have often been used to advance governmental and social goals, forcing on people less freedom and choice, not more. The belief that only good will come from this research seems naive considering history and even current policy in some areas of the world.

That being said, as a libertarian pro-lifer, I consider this to potentially be a rather positive development, as it could remove the need for the barbarism of abortion ... however, I can also see parents being forced to abort children they want, because their government will not allow children with certain genetic predispositions. These predispositions, after all, could make them 'subversives', prone to radicalism or criminality, or they could simply be drains on the social good, i.e. they'd cost 'too much' to care for.

"We not talking about here, blue eyes or good sportsman, or people who are good at music," she said.

We will be, in time.

|6.20.06 @ 12:04PM|#

Why "submit to nature's random genetic draw?"
Because it is not "thwarting God's will" as one colleague told me. So, is medicine in general
"thwarting God's will?" "No, God's will is that
physicians learn to heal the sick." But how about if physicians learn to prevent defects in first place, etc. etc. Now I don't particularly care how any other person interpretes God's will,
but couldn't they have the decency to grant
others their interpretation (if any)?

|6.20.06 @ 12:06PM|#

From that perspective, it is a perfectly sensible statement.

That is not how I take Simone's comments in context. She starts off with a slippery slope argument, then says "it sends out a signal that actually disabled people will be better off not alive." To me it signals that parents, given a choice between two otherwise indistinguishable zygotes, one with the potential to develop a disease and one without, will find the zygote with the disease potential less preferable. If and when the state steps in it will be much more of a moral dilemma.

There is a story out right now about members of an extended family who have elected, absent medical necessity, to have their stomach's removed. They each carry a gene that predicts an 80% probability of getting stomach cancer. I don't know exactly when a sole steps into a body, and Fyodor's coworker points out the nature of the conundrum, but I would imagine that most people can appreciate that this family would have been better off without the gene. This does not argue that the world would be better off without the family, but rather these people would be better off without an 80% chance of getting stomach cancer. Nature already chooses and miscarries unacceptable zygotes all the time, this just institutionalizes the process.

People already do genetic selection, when they choose their spouses, or at least, their bedmates.

To say that we should not engage in using technology to acheive the same end is closely akin to saying that we should all play blind bed hopscotch, and that one father (or mother) is as good as any other.

|6.20.06 @ 12:08PM|#

Just a question. Doesn't the process of taking that one cell away from the blastocyst introduce additional possibilities for defects?

|6.20.06 @ 12:55PM|#

Swillfredo Pareto,

That is not how I take Simone's comments in context.

Well, the write-up itself mentions exactly what I commented on.

As to the stomache removal story:

Yes, but there is a difference between a person out of the womb choosing to remove their stomache and the "choice" presented to an embryo here. Or at least that is how someone who views ther embryo as a person would look at it.

If and when the state steps in it will be much more of a moral dilemma.

No, it just adds to the nature of an already significant dilemma.

|6.20.06 @ 12:56PM|#

"It sends out a signal that people are worth less than other people, it sends out a signal that actually disabled people will be better off not alive."

I assume I will get trounced for writing this, but.... I actually feel sorry for someone that would say the above. She must be hurting.

|6.20.06 @ 1:40PM|#

I always want to know if the people who object to treatments like this wear eyeglasses. Those lenses are sending the message that myopia or astymatism is someone inferior to perfect vision.

Seriously, the one argument on this point I respect was raised upthread by the person who mentioned the possibility of introducing other problems by selection process. (Eg: I read someplace where I can't remember about some evidence that children conceived in vitro have more learning disabilities. There was some discussion that this was an effect of selection bias, in that parents who could afford in vitro were much more likely to take the trouble to diagnose and treat learning disabilities.) Once those objections have been addressed, there is no reason whatsoever to object.

|6.20.06 @ 1:51PM|#

"Is there a rational argument for why a disabled person would choose to be disabled?"

Is there a rational argument for why a disabled person would choose to be dead?

uncle sam|6.20.06 @ 1:52PM|#

Biofascism

uncle sam|6.20.06 @ 1:55PM|#

Deaf culture encourages deaf people to pretend thy aren't disabled, but many of them have no problem collecting disability benefits.

|6.20.06 @ 2:28PM|#

Reminds me of Harrison Bergeron from Kurt Vonnegut. If you haven't read the short story, it describes a future where everyone who has natural abilities is handicapped in order to make everyone equal. It's a decent read.

|6.20.06 @ 2:29PM|#

|6.20.06 @ 3:52PM|#

a puzzle, really? Eugenics hasn't really worked out well in the past, whether it's forced sterilization, 'one-child', or 'sex selection'. These types of advances have often been used to advance governmental and social goals, forcing on people less freedom and choice, not more. The belief that only good will come from this research seems naive considering history and even current policy in some areas of the world.

That would be a problem with governments not the advances.

That being said, as a libertarian pro-lifer, I consider this to potentially be a rather positive development, as it could remove the need for the barbarism of abortion ... however, I can also see parents being forced to abort children they want, because their government will not allow children with certain genetic predispositions. These predispositions, after all, could make them 'subversives', prone to radicalism or criminality, or they could simply be drains on the social good, i.e. they'd cost 'too much' to care for.
again, only if it's a governmental agenda.

"We not talking about here, blue eyes or good sportsman, or people who are good at music," she said.

We will be, in time.

In a capitalist society it would still only be for those that can afford it. Most parents would do the procedure because of a genetic defect/disease. If they could afford it and picked from those defectless 10 or so embryos blue eyes too, why would it matter? Random is better because.......?
In most cases all 10 or so embryos will not be used.
Elective abortion for defects in regular pregnancies would still be possible, you wouldn't need to use abortion in the designer embryos.

|6.20.06 @ 4:44PM|#

nml

But eventually, the process will become cheaper and cheaper until one day it becomes standard practice.

I mean who doesn't have a phone, a car, or even a place to live.

As with all new technology, at first it will be extremely expensive and only accomplish very little, then it will somewhat expensive and accomplish more, then it will be moderately priced and often a variety of options, until finally, it becomes a normal part of pre-natal care.

|6.20.06 @ 6:37PM|#

but by eliminating those genes by selecting them out of our species we risk lowering biodiveristy...think of the biodiversity.

:P

|6.20.06 @ 6:42PM|#

Perhaps it would.
But it is still rather involved, taking fertility drugs,surgery etc.
If I could eliminate a disease from my future child -I would.
I used prenatal testing- a majority of women (with insurance) do use what is currently available. Had I been an older mother I would have used amniocentesis (which has a risk of miscarriage)

If someone wanted to use it electively for certain traits I still don't have a problem.

|6.20.06 @ 6:43PM|#

i need to stop wearing glasses becouse it devalues my life and the lives of others who have the same genetic disablity.

don't bother responding as i will be unable to read it.

|6.20.06 @ 7:00PM|#

I mean, why fight it at all. This is where we are headed. We are going to be completely in control and able to direct our own evolution. I say it can't come fast enough, and that we should be blowing up the flood gates to make these thearpies possible as early as possible.

|6.20.06 @ 7:02PM|#

Laser eye surgery and contacts should be illegal because it devalues the live of joshua corning.

Poor people aren't able to afford laser surgery so we shouldn't allow those rich horrible capitalists to have it.

|6.20.06 @ 8:25PM|#

There are two questions: whether giving the treatment to one person leaves that person better off, and whether giving the treatment to all people leaves all people better off, or worse off.

Some of these treatments impose negative externalities. For example, racism exists. Almost any one mixed or African-American child would have more social opportunities with lighter skin than with medium or dark skin. But the one mixed or African-American child would suffer increased risks of skin cancer, and the other African-American children would face even more racism and stereotyping about their backgrounds (because their parents 'couldn't afford' or 'didn't want' them to pass).

|6.20.06 @ 11:34PM|#

the other African-American children would face even more racism and stereotyping about their backgrounds (because their parents 'couldn't afford' or 'didn't want' them to pass).

To put this in practicle terms rather then relying on the race card...you should let your child die when she is sick becouse it would be unfair to all the other children who did die becouse thier parents did not care enough to study hard in school so they could earn enough money to pay for a doctor.

|6.21.06 @ 5:32PM|#

Um, no, my example was one situation where many people are left worse off than before; your counterexample was one situation where all people are left at least as well-off as before. Note my test: 'negative externalities.'

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