Eugenics is bad, but if you know any children who have suffered from Tay-Sachs or cystic fibrosis, it’s easy to understand why a parent would want to prevent their suffering.

I have severe concerns not only about the ethics, but also about the application. Serious genetic defect = what, precisely? In some countries being female is a serious genetic defect, being gay is a serious genetic defect, being inconvenient is a serious genetic defect. Just because something *can* be done does not mean it *should* be done

There’s no evidence to suggest homosexuality is due to genetics.

Sorry felicity but none of those things would be considered a serious genetic defect. None of them, by themselves reduce your life expectancy or quality of life.

Modern medicine has provided us drugs to treat most diseases. No one questions, “how do you quantify disease? Is homosexuality a disease? Will medicine provide drugs to treat homosexuality? I have ethical concerns about all this ‘modern medicine’ stuff”. Treating kids with cystic fibrosis won’t suddenly turn everyone into a Nazi eugenicist. Treating kids with Tay-Sachs won’t suddenly turn everyone to a racist, gay-hating bigot. It will just treat kids with serious diseases. There’s no secret agenda here.

I understand that Lorraine, I just think when it comes to genetics things go onto dodgy ground. Will it always be used for medical help? What about when people want the perfect child with the perfect face and intelligence? Where does it stop and who gets to decide what you can or cant do?

Oh no! We could end up as a species of intelligent, attractive humans. Oh the humanity!

What would happen to the church when the world has rid itself of ignorant ugly people? Who would join the priesthood?

Lorraine
In so many respects you are right and then I stop and ask about the safeguards against the second generation being born without a more serious defect that the corrective procedure caused thirty years previously. At that stage the genie is out of the bottle and we could have started something that is far worse than the original disability or disease.
At least with GM foods you can conduct limited and controlled trials over generations of plant life to see the dangers though you can also get that wrong. It is not possible to conduct such trials in humans as it would lead to the loss of embryonic life forms.

Lorraine
In so many respects you are right and then I stop and ask about the safeguards against the second generation being born without a more serious defect that the corrective procedure caused thirty years previously. At that stage the genie is out of the bottle and we could have started something that is far worse than the original disability or disease.
At least with GM foods you can conduct limited and controlled trials over generations of plant life to see the dangers though you can also get that wrong. It is not possible to conduct such trials in humans as it would lead to the loss of embryonic life forms.

Lorraine
In so many respects you are right and then I stop and ask about the safeguards against the second generation being born without a more serious defect that the corrective procedure caused thirty years previously. At that stage the genie is out of the bottle and we could have started something that is far worse than the original disability or disease.
At least with GM foods you can conduct limited and controlled trials over generations of plant life to see the dangers though you can also get that wrong. It is not possible to conduct such trials in humans as it would lead to the loss of embryonic life forms.

Anyone remember the film Gattaca , eugenics opens up all sorts of dangerous doors. It’s a tough question as if it works to help people then it seems like a good idea but who would be the regulators. Hitler was a supporter of this kind of science too.

Hitler was Christian too, but we haven’t outlawed Christianity because one monster said he believed in it.
Nor should we ban a medical treatment that can cure horrific diseases because the general public don’t understand it.

If a Hollywood science fiction movie forms part of your argument against, it wouldn’t hold up well…
To have this procedure available as an option, rather than the modus operandi, would be beneficial.

Naziism was the worst thing that ever happened to eugenics. They took it to a horrific extreme and set it back 50-100 years. Comparisons are valid but saying no to it because of what the nazis did is very regressive.

No james that was called eugenics this is genetics and eugenics was practiced by lots of countries around that time including the uk and the usa. Try using that reasoning with the people who suffer from these genetic diseases.

@ James Quirke: I agree with Phil, if you have to quote a science fiction movie as a reason not to approve of such treatment your argument is flawed from the start. And modern eugenics has nothing to do with Nazis or Hitler

It wasn’t just Hitler who supported this kind of science, in fact it was in America where most of the support and funding for the idea came from. I think this kind of science while seeming to be rationally beneficial and harming no one is opening up a dangerous can of worms. It can be used to remove genetic defects but where do we stop with what is or can be labeled a genetic defect – could being left handed, brown eyed or from a certain ethnic background soon be considered a defect. I mention the film Gattaca not as to make the argument just to show an example of how such science could potential make the world a place full of people who are the same and produced just like robots on a factory line. While its great to imagine all the ills that could be cured by this science it’s also worth considering all the possible negative consequences of such rational arguments for genetic interference when taken to their logical end.

James, you’re confusing genetics (a science) with eugenics (a social policy)…

…one gives you options; the other takes them away.

@ Matt, you say tomato I say tomahto. Just because they call it something different doesn’t make the reason and arguments behind it any different it’s still aims to remove ‘undesirable ‘ traits from the population. Anyone remember all the debate over the genetic modification of food?

Eh, James, that’s not tomato/tomato; that’s tomato/taxation. You’re seriously mixing things up here, and not in a positive way. Developing a new kind of hammer shouldn’t be outlawed just in case someone hits someone else in the head with one…

No being left-handed, brown eyed or from a certain ethnic background are not genetc defects. I think the scientific and medical community all agree on that so no worries there.

@ mark, Eugenics is the “applied science or the bio-social movement which advocates the use of practices aimed at improving the genetic composition of a population”, usually a human population.( Wikipedia definitions) while Genetic engineering, also called genetic modification, is the direct manipulation of an organism’s genome using modern DNA technology.
Thus genetic engeneering could be used as a direct tool in bringing about eugenic methods of practice in medical fields something which wold need to be examined and regulated strongly, this as I say could be used for good but also has dangerous implications if used incorrectly and applied to the population as a whole. If we’ve learned anything from the past its that when humans start to play God, bad things can and have happened when they are left to their own devices.

@James. You talk about “undesirable traits” like you’re talking about ginger hair. We’re talking about crippling or fatal diseases here. How can you stand in the way of other peoples health an well-being just because you take your scientific education from fictional films?

@ Ross, maybe they do agree but who’s to say that won’t change? Once the technology is there what’s to stop it from being hijacked by political lobby’s and movements to enforce controlled genetic selectionsism. I’m not saying the science is all bad as it could be used for good as long as it stays controlled and regulated and in the right hands it can help people to live longer, fuller and healthier lives and who could rationally argue against that?
i’ just warning of the perrils of such technology and seeing that while we may remove dibilating genetic desease the same technology in the wrong hands can be used for evil and the removal of certain traits from the population without consent. It could for example lead to genes for genetic sterility being implanted in certain populations, I just thinking outside the box at some of the possible risks such technology holds much like those who protest neculear power and the atom bomb.

@ Luke , I’m not saying the technology is inherently bad but what I am saying is its potential dangerous. No one could stand in the way of something that could potentially help millions but I see that the same technology in the wrong hands and used in a different way could have negative consequences, the mentional of the fictional film was simply meant to paint a picture in people’s minds of such a possible future if this same kind of technology is taken to its logical end i.e why stop and fixing genetic diseases why not remove genetically inferior traits from the human genome altogether. I’m simply arguing that just like we can use all sorts of technological advances to improve the quality and lengthy of human life so too we can use it to regulate and control it – sometimes with dour consequences.

@James The genes aren’t being modified in any way, the nucleus from one egg is simply being extracted and placed into another which doesn’t contain the same problematic mitochondrial DNA. The reason this is currently illegal is because it is one of the steps involved in cloning.

But I really don’t understand how anybody could rationally think this could lead to a Gaticca type situation, for one it would be prohibitively expensive and completely pointless beyond curing genetic defects. Secondly if you are worried about designer babies, then the area to be concerned about is IVF treatments in general, because it is much more feasible to collect a couple eggs, combine them with sperm and test to see which ones would give you the desired traits. (still probably a couple of years out and still very expensive, but at least currently plausible). But to think that this will lead to a Gattica type homogeneity is insane, because it assumes that the whole human race will get aboard and switch to IVF instead of sex. Which isn’t something I’m really worried about.

All the arguments against this are either religiously based or just a generic (and generally uninformed) fear of science. But it isn’t right that peoples religious dogma or their ignorance should stand in the way of other people being able to be born free of the horrible afflictions of their parents, of those parents being able to have kids without fear of passing those conditions on.

@ John I’m an atheist so my arguments have nothing to do with religion, they do however have everything to do with thinking about both sides of the potential uses for science and technological advancements. Let’s us not walk blindly into a path of rational ends for fear of loosing a part of our humanity.

@John. That was so well put I want to upvote it twice.

@James, what part of humanity should we be afraid of loosing here? Because, at least for this specific treatment, all I can see us loosing are some very horrific and debilitating illness. Perhaps we need to take it on a treatment by treatment basis, and I’m okay with that. But at the very least, for this one treatment, I can say resoundingly yes, because so far I haven’t heard a single thing that would give me pause.

” But to think that this will lead to a Gattica type homogeneity is insane, because it assumes that the whole human race will get aboard and switch to IVF instead of sex. Which isn’t something I’m really worried about.”

Exactly. The only person I know who has had IVF with pre-implantation testing (in the UK, one of the limited number of countries that permits this for medical reasons) did so because she had had multiple miscarriages and tests revealed that she was passing on a fatal hereditary genetic disorder to a high percentage of embryos. She’s now a mother of two thanks to genetic testing and considerable effort/expense (and the fact that she wasn’t passing it on to *all* embryos). Hardly “designer babies”, unless you interpret “designer” as “not dead”.

@Lisa yeah not now everyones not goin for IVF but like in the movie surely down the track as people want an advantage for their kids others will follow so they dont leave theirs disadvantaged and Im sure as with most things business will start to go for the profit and will start engineering out unwanted traits like I dunno being short or whatever. I vote yes tho because if there is a chance to further humanity and end the possible suffering of future peeps then who am I to say no.

James, do you use the film industry and Ignorant church. To help you make decisions, you have a brain and use it!

@ stephen, indeed I do think for myself unlike a lot of people who are simply accepting that this is always going to be a good thing,I agree that it has potentially brilliant benefical implications but as I say it gets us one step closer to a potentiall dangerous place. I try to look at both sides of things before I contribute to debate and it seems I’m one of the only ones who seems to be seeing both sides of the potential this kind of technology has. P.S. Read my coments before you go mouthing off, I’ve stated I’m an athiest so religion has nothing to do with my point of view, and the mention of the film although science fiction was meant to simply paint a picture however fictional of how this kind of thing might potential be used for ends other than its original intention of helping people- a point I’ve explained twice already in responce to peope above!

Wonderfully put Mark Dennehy. Personally I have witnessed at first hand how genetic disorders can debilitate and destroy a young child’s life. We should do all we can to investigate genetic based treatments for these dreadful diseases, but within a tightly regulated international code of practice.

How do you regulate it? There will always be a few rouge operators.

Excellent question

The argument from defeatism. Roads can be used for getaway cars and to transport nuclear weapons. Lets close all the roads.

Rogue operators don’t really exist anymore. In fact genetics is the most heavily regulated area in the world – this due to preventing human experimentation, (WWII), thalidomide incidents reoccurring, Tuskegee incidents, etc.
There are various rules and codes of conducts already in existence, and these work very well.
The question here isn’t so much to do with preventing rogue operators as it is to do with how ethical it is to allow such a thing to be carried out.

I agree with your comment Alyn. It’s very difficult for me to answer this type of question with a simple yes or no. This progress raises a few questions some of which have been discussed above. Any human has the right to a decent life, but for me this is slightly clouded by the fact that I don’t know enough about the potential dangers, if any, associated with this type of “intervention”. So, I’m in the “I Don’t Know” camp.

Todd job Drs. Salk and Fleming didn’t have your attitude.

Good! IPad?

Don’t tamper with nature. Eyes closed kinda view on it. I’m sure if nature tampered with your newborn to leave it looking at years of pain and debilitating genetic defects you might not mind people tampering with nature. My partner works with children and you adults born with various defects and we intend on having every available test to see what’s coming our way

Its just my own opinion I wouldn’t want it personally but If people want to do it then who am I to say anything

Shouldn’t fool about with Mother Nature?
How do you think she got to be a Mother then?
:P

Think father time had something to do with it Mark :-)

@Regina: Don’t tamper with nature? – better go back 6,000 years and tell the mesopotamians not to introduce agriculture to the world so!

I’d be a lot happier to avoid tampering with nature if nature stopped tampering with us :-P
If nature stops inflicting debilitating diseases on people essentially at random only then should we stop curing them.

Damn right! And no vaccinations either! And bandaids are the work of the devil, if your child’s bleeding, it’s Gods Will and who are you to stand in the way of that?!!!

I think I would explain my stance a bit more. I’m not into religious excuses for stopping scientific advances.. I’m all for vaccinations. You think you are being funny or smart.

There are plenty of Deaf people (members of the Deaf community, not hard of hearing people, there is a difference) who are very worried about the eugenics movement. When it comes to illness like CF, sure,as it would help people with the genes, but when it comes to people with a totally different world view, such as Deaf people, we do not want to see an end to our culture.

If you scoff at this, you obviously have no idea of what it is like to be Deaf. (note the capital letter, D)

There was an international agreement between the WFD (World Federation of the Deaf) and the IFHOH (International Federation of the Hard of Hearing), to agree on two terms to be used, and these two terms are to be Deaf and Hard of Hearing. Here is the link: http://www.ifhoh.org/wfd.htm

In a joint declaration signed in Tokyo in 1991 the International Federation of Hard of Hearing People and the World Federation of the Deaf agreed that “hearing impaired” is a term intended to cover deaf and hard of hearing individuals under a single category. However, deaf and hard of hearing persons in most countries reject this definition because it fails to recognize any distinction differentiating these two social categories.

The joint declaration recognizes and respects the right of individuals with hearing losses ranging from mild to severe to regard themselves as either “deaf” or “hard of hearing” and both organizations agreed to recognize the terms “deaf” or “hard of hearing” only in their official terminologies.

IFHOH wishes to make it clear that references to “hearing impaired” people in any document accessed through this web-site is not the responsibility of IFHOH nor are they intended as a contravention of this agreement.

There is such an ideological chasm between members of the Deaf community and the wider hard of hearing community. If you use the term ‘hearing impaired’ the general public will more than likely think of issues that are more relevant to hard of hearing people such as assistive listening devices, hearing aids, and so on, and completely discounts the whole experience of being a member of the Deaf community.

As you know, this is why Deaf people do not want the concept of ‘hearing difficulties’ associated with them. They’re DEAF, end of. The problem here is that when a member of the Deaf community sees the word Deaf, they think of something very positive, like the values of the Deaf community, friendship, comradeship, the richness of the various sign languages, Deaf culture, Deaf Arts and so on, whereas the man on the street sees the word DEAF and thinks of affliction, loss, suffering, left out, and all the other negative things they think of.

When it comes to sicknesses like CF or Tay Sachs, I would look for cures, of course. However, poeple who do not understand Deaf culture would seek to find cures for Deafness without considering the possibility of Deafhood. Yes, there is such a thing. http://www.deafhoodfoundation.org/Deafhood/Home.html

Do you care? Probably not. But we do.

What a tangent you went off there Alvean

Bullshit Alvean. If a cure for deafness was found, that would be nothing but good news. Only if it was forced on people without their consent, would it be something to fear. And frankly, if the Deaf community were to try to force people not to take a cure, that would be just as wrong and just as bad as having a cure force on them.

And none of this has anything to do with the news story above; you’re talking about eugenics, it’s talking about medical care. It’s got as much to do with eugenics as the legal ban on siblings marrying has to do with eugenics (ie. yes, if you stretch a dictionary, you can call it that, but you’re being daft when you do so)

No, for us Deaf people, this is VERY on point.

Just my explanation to you why we are concerned about genetics when it comes to people with the Deaf gene.

so if you were to have a child that was going to be deaf, and you had the chance to prevent it, but you didn’t just so they could fit into some deaf culture?!
if so you are an idiot

Alvean, what you are talking about there is not genetics or medical care, but pro-Deaf eugenics. And eugenics was bad no matter who was doing it or why. Pro-Deaf eugenics, anti-Deaf eugenics, Aryan eugenics, anti-Downs Syndrome eugenics, it’s all the same evil shite.

Let’s leave it at this, you obviously don’t understand my perspective, though I get yours.

I lived for 2 years with extremely poor hearing and of course that is a different experience to being deaf.

I’d imagine that, at the very least, your average ignorant bystander has some understanding of what it means to be completely deaf.

My experience of having less than 20% of my hearing was one of being under constant suspicion of the people around me. People who thought I was faking it or using it as an excuse to be rude. People couldn’t understand that it’s possible to hear that someone is speaking without hearing well enough to understand the words. They couldn’t understand how exhausting it can be to attempt to engage in long conversations or meetings. I was questioned for being able to identify that an airforce F1-11 jet flew overhead (it shook the f***ing building!).

Then I had surgery on one ear and the attitudes became even worse. Now I could understand people quite well in quiet rooms where people speak in turn, but I couldn’t understand people if there was any kind of background noise.

Not to in any way degrade the experience of those who are deaf, but I always imagined that if I were completely deaf, people would understand that and I wouldn’t be subjected to the daily third degree from ignorant, insecure people.

In any case, I accept what you’re saying. It’s a completely different experience. One has its own culture and the other does not. There are people who, given the option to be “cured” of their deafness, would choose not to.

So Alvean your telling us that your so being deaf is the most important part of your identity and because you belong to a community of others you identify with ye are all so selfish that you would essentially WILL deafness onto another human unnecessarily because your afraid of losing your sense of community of some bollocks! How bout you let them cure whatever they can and not hold society back. Live and let live

So you, without having ever met me, or know me from the proverbial Adam, presumed that I had a crap quality of life, with a lot of things missing from it, just because of your preconceived notion of what it means to be deaf? Hmmm. Who do you think you are?

Indeed, if you read what I typed carefully, in previous comments, you would have realised that did not say I was advocating making babies deaf. Nope. If the babies were already deaf, leave them the well alone.

It is a totally different thing to looking into the eradication of cystic fibrosis and Tay Sachs, as these are diseases.

Being deaf is not a disease. Indeed the very existence of deaf people have contributed to the world in many positive ways. Just by their very nature of being deaf.

It is rich that you think that my view of letting deaf people be deaf people is actually holding society back??

Boy, you have a lot to learn.

That’s why it would make sense to leave the decision to parents, Alvean. I myself don’t know if deafness is hereditary, but if it is, carrier parents would have the option to maintain it if they felt it was the best decision for their children (and I would argue deaf children would be in better position if they had deaf parents who understood their strengths and challenges as members of the deaf community). No loving parent, on the other hand, would want their children to suffer from Tay-Sachs. Your arguement would be one for giving this decision to parents.

Um, probably, yes. It’s where the line is drawn in the UK at the moment for pre-implantation testing of IVF embryos, and I haven’t heard of a rush to breach those guidelines yet.

Indeed, this consultation is exclusively to do with mitochondrial DNA, not the larger “genome” of nuclear DNA. There’s not really much you can do with mitochondrial DNA than fix faulty mitochondria.

It’s also grossly untrue. As in, its never happened with humans outside of a WW2 concentration camp.

The first step to eugenics was probably when we managed to make fire. That was our first mistake.

I know, I saw a film the other day called Terminator, and then I read an article about this hoover that can clean your house on its own. I mean its only a matter of time before Skynet is up and running and the robots are hunting us!

I’m guessing you’ve never known a child who suffered from hemophilia, Tay-Sachs or cystic fibrosis? I had a childhood friend with a sibling who died young from Tay-Sachs and it caused unspeakable pain to both the child and his family (sufferers inevitably die by the age of 5). If you knew yourself to be a carrier, would you really be so willing to let your child die? This idea that nature is wrong is ridiculous. Nature routinely would kill infants.

So you think if we can help prevent diseases don’t bother? Very ignorant.

@Edwina, it really wouldn’t affect the next generation at all (beyond not having a chance of contracting the mutation in question of course), and as this is something that is done to the egg, you would expect anything that would effect the second generation to be evident in the first. The mitochondrial DNA doesn’t really effect anything beyond creating the power source for cells (for which it is obviously very important) and it is only passed maternally. What is interesting about mitochondrial DNA is that they have a separate evolutionary source to our nuclear DNA, and were transferred in by bacteria, so they are really very independent of the rest of our DNA.