Sunday, January 16, 2011

Selecting out embryos with stuttering genes?

Yesterday, I saw a talk show on German TV on IVF (in vitro fertilisation). The guests discussed whether parents should have the right to select out embryos with genetics disorders. One guest suffers from a genetic disorder causing painful chronic inflammation. He said that he wished his parents had selected him out. And he would scan embryos for the gene defect, and select them out.

Would you have wished that your parents had selected you out for another embryo? Would you scan embryos for stuttering genes and select them, assuming there are unambiguous genes for stuttering?

During my teenage years, my suffering was too much, and I would have wished my parents had selected me out! But now I would say No, also because my embryo not only had stuttering genes, but also genes for writing such an interesting and challenging blog! And I could not possibly spare that experience from the stuttering community! ;-)

In terms of scanning embryos and selecting out "stuttering" embryos, I would say: it depends. If the stuttering is expected to be severe, then yes. If it's mild, then no.

What is your opinion?

25 comments:

pago.clone@gmail.com said...

Well, it's really a question of probability. What is the probability that I would be happier and be able to "accomplish more" if I was born without stuttering genes. That's the question everyone should ask, and I suspect in most cases, the answer's ambiguous.

In my case, and in probably many others too, stuttering has directly created some positive dispositions, such as excelling at school work. To the extent that the led to good outcomes that wouldn't have otherwise been possible without stuttering, then I wouldn't opt to have my stuttering genes selected out.

Anonymous said...

There has never been a point I wished I had been selected out.

I think another question would be since stuttering is becoming better known as a genetic condition does it make it more difficult to get a female because she knows having children with the condition is a possibility.

Something that differentiates stuttering from most other disorders is that PWS do not not feel sick. This is very important because they are still able to live relatively normal lives. Steven Hawking has said he is very fortunate that he does not feel sick and if he felt sick he could not do his work.

I think it should become normal for parents to select for things like childhood cancers, mental illness, or serial killer genes.Basically any condition that causes physical pain like the painful and chronic inflammation. I would much rather have stuttering than that. I don't think selecting out stuttering will ever be a very high priority in comparison to things like Tay-Sach's and Cystic fibrosis.

I would select out for EVERY genetic disorder because I want my children to have the highest starting point possible and there is no price to put on such a thing. But for things I would select for, stuttering isn't close to the top of the list.

Tal said...

Phrasing it as "would you have wished your parents selected another embryo over you" is a bit like "would you rather have never existed, than stutter?" The decision about whether to weed out stuttering embryos in the future is very different.

At the time you make the selection decision, assuming that you have no other information about the embryos, why would you pick one with even mild stuttering genes when you could pick one without just as easily? Don't you prefer your kids to be as successful as possile?

Anonymous said...

Tal,

When you make the selection decision you know what you're selecting? But we don't really have a comprehensive database of genes for stuttering. The conclusion drawn from past research is that it is polygenic like all complex human traits and Drayna has recently located mutations that strongly correlate with stuttering, but only a small percentage of the stuttering population.

My feeling would be to give the most genetically gifted embryo (or at least the one with no major problems) the chance. Of course given 10 embryos and you know one will stutter and the other 9 will develop a lethal illness before age 30, I think the stuttering one deserves the chance.

Konstantin said...

It is off-topic but I still would like to share my joy that Colin Firth won a Golden Globe for his performance in The King's Speech! Hopefully he will also win a well-deserved Oscar.

sachin said...

It is difficult to say what purpose a particular life may serve. Two sages in Indian mythology had severe disabilities but both were men of deep realisation and contributed to their society: Ashtavakra (=body bent in eight places) and Jad Bharat (=Bharat the dumb)..
There are many more I am sure, who would have been screened out from Eugenics point of view..But, that would have been unfortunate..
Marty Jezer had severe stuttering but the books he wrote, I find amazing...

Anonymous said...

Yes Sachin, but there are many more people with average intellects and athletic abilities with disabilities and it takes a huge toll on them. I seriously doubt my professional life would be much different without stuttering. The ONLY reason I have a social life is a because of my professional life. If I weren't of above average intellect and a series of events where I was in the right place I the right time never occurred, I might not have ever become self-sufficient, but if I didn't stutter I would be able to rely on my social skills and abilities to influence people like everyone else. To be successful with any type of developmental problem, the threshold is substantially higher. It was once thought that the IQ of PWS was significantly higher because stuttering college students had a much higher IQ than those who didn't. It turns out IQ isn't higher, but the academic ability to get to that point needed to be higher.

Of course I think stuttering isn't a very high priority for selection because the people with the disorder are not in physical pain.

Tom Weidig said...

>>> Something that differentiates stuttering from most other disorders is that PWS do not not feel sick.

I don't agree. Many, especially teenagers, have significantly suffered.

I know TWO who committed suicide, and many lived in pain for years.

ig88sir said...
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Anonymous said...

I've never heard anything about the suicide rate. Where did you hear it was 1 in 5?

Gustaf said...

I don't regret that I was born. Despite my life being seriously limited due to stuttering, I can still appreciate how lucky I am having been born a human, in our time, in a civilized country. And apart from stuttering, I'm happy being myself too.

On the other hand, I feel I don't have to take such care of my life. Life is simply not as precious as it would have been, had I had a family, a responsible position and other things (more) fluent speakers can have.

So if I would pick a good thing about stuttering, it would be that it gives us this opportunity to live life more recklessly; to worry less about reaching a certain age. We may for example consider taking highly payed but dangerous jobs, or even trying medications with unhealthy side effects.

If parents will one day have the opportunity to prevent new stutterers from being born, I think they should absolutely do so. Preventing suffering must be the leading principle.

ig88sir said...
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ig88sir said...

Off topic - Tom: Where do you think this genetic mutation came from in the first place? I'm sure it's multi-factor. Also do you think that transient childhood stuttering is due to a (literally) left hemisphere space issue? So what happens to that space if you don't use it? Super spatial abilities!?

Ora said...

I have heard that the suicide rate for adult PWS is 1 in 5.

That can't be right. 20% of adult stutters commit suicide??

Anonymous said...

Ora,

I've looked into this and I've found only sources that say stuttering is not a risk factor for suicide.

I can't find anything that says it is, but if that were true it would be useful to start a stuttering awareness campaign, even though it also makes PWS look bad.

Konstantin said...

It is simply impossible that the suicide rate among adult stutterers is 20%. Then any of us should know PWS who have committed suicide and I don't know of any example although I know more than 10 PWS.

Moreover, all the information I have found on the web says that the suicidal rate among PWS is not higher than for the general population.

Of course, I guess the thought has crossed the mind of many of us but this also holds for quite many people who don't stutter.

I have the feeling that many PWS tend to overestimate the negative impact stuttering has on their life and in some way like to wallow in self-pity: "Oh, see, so many of us commit suicide.."

Of course, stuttering is a serious handicap and causes a lot of problems but there are also so many other difficulties fluent people face every day.

Ora said...

Re. Stuttering and suicide:
It seems just common sense that stuttering is probably correlated with depression and feelings of low esteem, which are correlated with higher suicide risk. It's logical that people who stutter are more often depressed, and I'm sure the studies show that depressed people are at a greater risk of suicide.

However, based on a quick Google search, it doesn't look like there are studies specifically showing an increased risk of suicide in stutterers.

We can browse through some links that Google returns:

http://www.google.com/search?q=stuttering+risk+factor+for+suicide&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#sclient=psy&hl=en&safe=off&client=firefox-a&hs=Jy&rls=org.mozilla:en-US%3Aofficial&source=hp&q=%2Bstuttering+risk+factor+for+suicide&aq=f&aqi=&aql=&oq=&pbx=1&fp=41d9d04263c928a1

Specifically, see a 2010 book titled Preventing Patient Suicide: Clinical Assessment and Managment, which states "However, no psychiatric studies identify stuttering as risk factors for suicide."

- http://books.google.com/books?id=EQFwW-s8djcC&pg=PA64&lpg=PA64&dq=%2Bstuttering+risk+factor+for+suicide&source=bl&ots=X_3Ks5BCxL&sig=e55tdkofhMdRPlg4jKgcUaKI5_o&hl=en&ei=Rbc2TbrhMIWKlwfG0vXvAg&sa=X&oi=book_result&ct=result&resnum=1&ved=0CBgQ6AEwAA#v=onepage&q=%2Bstuttering%20risk%20factor%20for%20suicide&f=false

If anyone cares to do a more thorough literature search, please share your results with us.

Tom Weidig said...

@igsir: A mutation arises when the DNA molecule undergoes changes when being copied, for example. Think of a scholar copying the bible which is copied by someone else which is copied by someone else and so on. A small mistake is being propagated. Some mistakes are caught, i.e. the organism dies and never reproduces. Others are not.

Re suicide, one in five is much too high. Stuttering is not an inherent risk factor, but can lead to significant stress than the vulnerable mind cannot handle any more.

ig88sir said...
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Anonymous said...

ig88sir

I think this is something that is very likely unique to you (and a subgroup of PWS with other mental conditions) and not necessarily related to stuttering. You should look into counseling.

Ora said...

ig88sir:

There's LOTS of information available on genetics and mutations. Start with Wikipedia: http://en.wikipedia.org/wiki/Mutation

ig88sir said...
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Anonymous said...

Ig88sir

I'm the same anonymous. I have not encountered many depressed people, but the ones I have were depressed regardless of their high status job with a 6 figure salary and their social life. I think they were just vulnerable and when something didn't go exactly right they couldn't handle it. One even admitted there was no reason for them to be depressed.

I'm only 20. I do not have a significant other, but I have a girl that wants to date me, but she isn't what I'm looking for. I've had girls in the past. I know of one instance for sure that stuttering played a role in that decision. The girl told me she hated talking to me so she couldn't date me, but she wanted to have casual sex still. I said no.

ig88sir said...
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HotColumbus said...

I am 26 years old now. I am a stutterer. I went to speech therapy when I was 22 and it didnt help me. Then a few months back I went to another and it was great. My stutter reduced and most importantly I felt no pain in stuttering.

I would recommend reading To a Stutterer. Its a book by speech therapists who are all stutterers. Its the best book I have read all my life.

Before that I used to feel a lot of pain when I stuttered and contemplated suicide a lot. But now I dont give a fuck (pardon my french). To all my fellow brothers and sisters please read that book. It is my life saver. If you want you can email me at the.niranjan@gmail.com and I will email it to you or get it from amazon at 4 bucks http://www.amazon.com/gp/offer-listing/0933388071/ref=dp_olp_used/182-0989371-8757955?ie=UTF8&condition=used

Back to the original point. Yeah I would have probably committed suicide in the near future before I lost the pain and negativity associated with my stutter. So it is definitely a factor and hence it might increase the rates.

But I have also seen that stutterers are much braver than ordinary folks. Theys have gone through so much hardship that "normal" people would fail to comprehend its severity and hence the rates might actually be below the norm amongst stutteres I think.