Prenatal genetic screening: a moral and ethical dilemma

[Alpha]

Increasingly, unborn children undergo screening for genetic conditions that may impact their life outside of their mother's womb. The implications of this are immense: the ability to plan for the arrival of a special needs child, or the ability to somehow intervene to prevent the onset of such conditions are just two examples. However, the ability to screen unborn children also gives rise to many other options, such as the choice of termination of a pregnancy based on the knowledge of a child (potentially?) having a genetic condition. Some alternatives are more difficult to classify as 'right or wrong' (if that is indeed at all possible), such as the favourable selection of embryos during the process of in-vitro fertilisation (IVF). Clearly, there is a moral and ethical dilemma.
Should genetic screening be encouraged and used more often, or even made mandatory?
What actions are in/appropriate as a consequence of genetic screening on the unborn?

The principal medical justification for screening is as a tool to find the incidence of disease. Only with this knowledge can prevention and therapy take place. Clearly, genetic screening has the potential to improve the lives of many, by avoiding or relieving suffering. As science advances, many previously 'untreatable' conditions now have cures. Without screening, such medical advances would be for naught.

Screening, therefore, has an important place in medicine. Screens grant information that can fundamentally change important decisions. Such as whether to terminate a pregnancy that otherwise would have been continued. I want to narrow this thread to discussion of prenatal screening, rather than general genetic screening (such as screening for recessive genes for traits such as cystic fibrosis, which is important in it's own right, as potential partners who both hold this recessive gene have a 25% probability of passing this on as a dominant trait, and a 75% probability as a recessive gene), as it presents a larger and more important dilemma.

Genetic screening can open decisions that I find objectively wrong, and implications that can be considered morally reprehensible by many. There is a noticeable and growing link between genetic testing and selective abortion. As a Catholic, I find abortion wrong in it's own right. But there is the question of whether it is 'acceptable' as a response to information gained from prenatal screening. Is it appropriate, for instance, if one knows that their child will have a short/difficult/painful/humiliating existence, to terminate the pregnancy?

At an extreme - yet entirely possible - future, genetic screening grants the ability to draw distinctions among people based on genetic makeup, over which they have no control (except in the case of prenatal selection of genes, which is a completely related issue). Government and society, driven by utopianism, social Darwinism, racism, sexism, pragmatism and rationalism have proven the capacity for this - in the past and present. Once groups of people with certain characteristics (genetic traits) are isolated and granted fewer rights (such as the right to life) (by society or authority), we have significant issues. In history, we have the example of explicit black subjugation in the United States and elsewhere. More recently, China's 'one child policy' has created a societal ethos that discriminates against female children. Are we seeing a new-yet-similar phenomenon with disabled children? If all people are entitled to dignity, does prenatal genetic screening erode some of this?

What if we began to accept screening and subsequent selection for intelligence, blue eyes and blond hair? Are we taking the baby steps toward such an end?

As screenings become more widespread - or even mandatory - we are faced with more issues. Who has the right to genetic information? Surely an individual would benefit from, or at least be entitled to, the knowledge that they will develop a condition such as Huntington's disease, which does not reveal itself at birth. But do insurance agencies have the right to this information? Employers? Government? We do not choose our genes, and we certainly do not choose to have genetic disease, but if the information about us is revealed, the flood gates are thrust open. The systematic denial of insurance to people with late-stage genetic conditions is a potential eventuality, among others.

The notion of 'normalcy' is entirely subjective; for example, how can we be sure who is truly insane in an asylum? The patient or the doctor? 'Normalcy', however, is what is sought after by many when they choose prenatal screening. Are we searching for a world where people are without genetic 'flaws'? What would such a world be like?

To me, it would be a much different world, a worse world. It sounds nice to imagine a world where there are no sufferers of autism, Down's syndrome, cystic fybrosis, etc., etc.. But this is such an idealistic vision. We will never be without these conditions. My own brother is severly autistic (note that this is from the measles, mumps and rubella (MMR) vaccination*, not a genetic condition, but the principle of disabled rights still applies). Had his condition been genetic, and we had screened for it, and terminated the pregnancy as a result, I would be a completely different person. I'm sure anyone with a disabled sibling/child would say the same thing. He is responsible for teaching me tolerance, courage in the face of adversity, true beauty, and many other principles which I hold dear - all this without even speaking a single word to me.

My girlfriend told me something last night that relates to this. She asked (rhetorically) whether disabled people are here for a reason. While their form of existence may be difficult for themselves and those around them, they are still capable of joy, sadness, and love - attributes which make them just as human as anyone else. However, she also asked me if I, given the choice, would cure my brother's autism and have him as a 'normal' (whatever that is) brother. I said that I didn't know. Would my brother be any happier as a 'normal' child? It seems easy to say 'yes', such as if you were given the option of catching influenza, or not. However genetic conditions are so much more fundamental than influenza. They define an entire being. Far more than gender, race and age will ever. It sounds almost mean, then, to say that I love my brother as he is, and if forced the choice, I would say 'no'. If I could give him the choice, I would think he would choose to become 'normal'. This is strange in itself, but until you have lived my life, I doubt anyone would understand my reasoning.

More than anything mentioned thus far, I am personally concerned with the message that prenatal screening and subsequent abortion sends to those already living with the relevant genetic conditions. If given the choice between a disabled child and an 'ordinary' child, I doubt anyone would choose a disabled child. This is one of the most important promises of prenatal screening. So, if you have two embryos in front of you, one with autism, and one without autism, and you are deciding which to implant, I would expect you to pick the non-disabled one. If my brother could understand you when you spoke to him, how would you rationalise your decision? Would it be that you don't want another person to go through the same existence as my brother? But how do you have knowledge of that existence? Sure, you can tell that the disabled embryo will develop into a child that will never write a single word in their entire life, but you have no idea of the positive transformations that this child could cause, or the people they will learn to mutually love and respect. If you chose the non-disabled embryo, is it because the life of a disabled person is 'less equal'? Are they any less of a person because of their disability?

* Do not accept the claims made that MMR does not cause autism. There is no other explanation why my brother was an advanced learner immediately before his MMR vaccination, and then unable to function mentally immediately after it.

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I understand that I have posed a great number of questions in this post. Feel free to tackle the lot, or whatever you feel comfortable/able to respond to.

[Joe]

Ok, I'm gonna attempt to stab at this, but I'm tired, and sidetracked with other things, so forgive any weird points, and just lemme know what I should clarify/explain more later

Should genetic screening be encouraged and used more often, or even made mandatory?
What actions are in/appropriate as a consequence of genetic screening on the unborn?

I'm of the opinion that it's highly unethical, at least in the case of the unborn. The unborn cannot give consent to the procedure, and their lives could be forever impacted, or even denied based on what is only likely or merely possible. As far as legal adults go, I don't really see a problem with it. If you want to know the things that you are likely to suffer from, that's your business. I personally would rather live life blind to those things, and just enjoy what time I do have here.

Genetic screening can open decisions that I find objectively wrong, and implications that can be considered morally reprehensible by many. There is a noticeable and growing link between genetic testing and selective abortion. As a Catholic, I find abortion wrong in it's own right. But there is the question of whether it is 'acceptable' as a response to information gained from prenatal screening. Is it appropriate, for instance, if one knows that their child will have a short/difficult/painful/humiliating existence, to terminate the pregnancy?

I think.....I think that it depends on the situation, and the parents involved. There's no catch-all blanket solution for this. One of my friends is an example of a similar situation. Doctors told her mother that she wouldn't be very likely to live at all past birth and that she'd have a very hard life with a lot of problems. She's now in her late teens, living a happy life. She has some issues, yes, but we all do, so maybe now you see why it depends on the situation. Most of the time, at least to my knowledge, such tests may only predict Possibilities, rather than certainties. It could be said that based on my family history that I'd live a very unpleasant life full of various mental illness and a multitude of heart conditions, yet as far as I know, I'm fit as a fiddle. (I haven't been to a doctor for a physical in ages, but had bloodwork done for a health class, which came back stellar)

At an extreme - yet entirely possible - future, genetic screening grants the ability to draw distinctions among people based on genetic makeup, over which they have no control (except in the case of prenatal selection of genes, which is a completely related issue). Government and society, driven by utopianism, social Darwinism, racism, sexism, pragmatism and rationalism have proven the capacity for this - in the past and present. Once groups of people with certain characteristics (genetic traits) are isolated and granted fewer rights (such as the right to life) (by society or authority), we have significant issues. Are we seeing a new-yet-similar phenomenon with disabled children? If all people are entitled to dignity, does prenatal genetic screening erode some of this?

I believe it does, and I agree that we are seeing a VERY similar trend with disabled children. Having a child with any sort of disability, regardless of severity is seen as a terrible thing. I'm not entirely sure of the reason, and prefer not to think on it much, but i would guess that it makes the parents look bad, in a sense. (forgive me if I'm stepping on any toes here, not trying to imply anything, just stating raw opinion, please don't read more into it than isn't there)

What if we began to accept screening and subsequent selection for intelligence, blue eyes and blond hair? Are we taking the baby steps toward such an end?

I believe so, and I would like to think that we could stop such a trend now, before it becomes commonplace and we all end up in a very very boring, very very bland world. The world needs all types, intelligent, not-so-intelligent, beautiful/handsome, and ugly/unconventional. It's this variance, and difference between us that makes us such a marvelous species, and makes life so wonderous to behold and observe. Even homosexuality would likely be eroded, as parents would not choose to have gay children, in favor of a heterosexual one. (this is presuming that homosexuality is ingrained genetically, which I believe it is)

As screenings become more widespread - or even mandatory - we are faced with more issues. Who has the right to genetic information? Surely an individual would benefit from, or at least be entitled to, the knowledge that they will develop a condition such as Huntington's disease, which does not reveal itself at birth. But do insurance agencies have the right to this information? Employers? Government? We do not choose our genes, and we certainly do not choose to have genetic disease, but if the information about us is revealed, the flood gates are thrust open. The systematic denial of insurance to people with late-stage genetic conditions is a potential eventuality, among others.

Frankly, I think that the right to genetic information belongs solely to a legal adult who gave consent to such a screening, as it's such an invasive procedure (perhaps not physically speaking, but it creates a sensation of invasion of self when I consider the prospect), that no one else really has the right to that information. Not even parents. And who is to say what a person would benefit from? I wouldn't want to know if I was going to develop some nasty condition, even if it would benefit me. That's like trying to play a game outside with gigantic storm clouds on the horizon. Sure it's enjoyable, but there's always that nagging fear that you won't finish before the thunder comes.

My own brother is severly autistic (note that this is from the measles, mumps and rubella (MMR) vaccination*, not a genetic condition, but the principle of disabled rights still applies). Had his condition been genetic, and we had screened for it, and terminated the pregnancy as a result, I would be a completely different person. I'm sure anyone with a disabled sibling/child would say the same thing. He is responsible for teaching me tolerance, courage in the face of adversity, true beauty, and many other principles which I hold dear - all this without even speaking a single word to me.

Just wanted to say that that was very well spoken of you, though I may disagree with the vaccination theory, I'm withholding all opinions based on it until actual, unbiased scientists perform a heavily reviewed study on the topic.

My girlfriend told me something last night that relates to this. She asked (rhetorically) whether disabled people are here for a reason. While their form of existence may be difficult for themselves and those around them, they are still capable of joy, sadness, and love - attributes which make them just as human as anyone else. However, she also asked me if I, given the choice, would cure my brother's autism and have him as a 'normal' (whatever that is) brother. I said that I didn't know. Would my brother be any happier as a 'normal' child? It seems easy to say 'yes', such as if you were given the option of catching influenza, or not. However genetic conditions are so much more fundamental than influenza. They define an entire being. Far more than gender, race and age will ever. It sounds almost mean, then, to say that I love my brother as he is, and if forced the choice, I would say 'no'. If I could give him the choice, I would think he would choose to become 'normal'. This is strange in itself, but until you have lived my life, I doubt anyone would understand my reasoning.

It's been said that I may very well be high functioning autistic (it would explain a lot about my childhood, weird quirks, odd habits, and other odds and ends concerning me), and if I am HFA, I would choose to stay this way. Sure some things are fairly difficult for me (I would have issues discussing something like this out loud, for instance, as I am far, FAR more comfortable behind a keyboard), but on the whole, things aren't quite so bad. I really can't speak for your brother, nor would I want to, as I lack his perspective on things, but conditions like autism/asperger's and others really do help to define a person. And besides, if I were aspie, and chose to become normal, what's there to say that I would be remotely similar to the way I am now? There's no really telling what exactly my neurological wiring has influenced, so I'd prefer to keep things this way.

More than anything mentioned thus far, I am personally concerned with the message that prenatal screening and subsequent abortion sends to those already living with the relevant genetic conditions. If given the choice between a disabled child and an 'ordinary' child, I doubt anyone would choose a disabled child. This is one of the most important promises of prenatal screening. So, if you have two embryos in front of you, one with autism, and one without autism, and you are deciding which to implant, I would expect you to pick the non-disabled one. If my brother could understand you when you spoke to him, how would you rationalise your decision? Would it be that you don't want another person to go through the same existence as my brother? But how do you have knowledge of that existence? Sure, you can tell that the disabled embryo will develop into a child that will never write a single word in their entire life, but you have no idea of the positive transformations that this child could cause, or the people they will learn to mutually love and respect. If you chose the non-disabled embryo, is it because the life of a disabled person is 'less equal'? Are they any less of a person because of their disability?

They are no less of a person at all. If anything, I believe they may be more of a person, because they experience things that normal humans never will, things unique to them. And it's very true that such people can have amazing impacts on those around them. While I'm thinking about it, I would read up on Amanda Baggs. She's a fairly brilliant autistic/disability rights advocate, and has a lot of interesting things to say.

[SOLDIER #819]

Genetic screening should be encouraged, I believe. There is no harm in knowing what may lie ahead. The fact that you can prepare is even nicer. It is probably one of the better things you can do for a future child. So long as it costs money, however, I doubt it will be made mandatory. And while I believe it can only be beneficial... people have their beliefs. Making it mandatory would know doubt violate some sort of freedom, particularly when knowing something does not lead to prevention, as the only way to prevent a child from having the disorder would, at this point, be through abortion.

Which is why I have nothing to say about what actions are "appropriate" if you do find that your future child may have some sort of terrible disorder. It basically leads into the abortion argument, which I think only detracts from this subject given how much it's been talked about.

I wanted to comment on the possibility of somehow screening out disorders, given that it somehow doesn't first hit on the topic of abortion (which is no doubt an impossibility in reality). Personally, having lived with moderate OCD, I realize that it shapes who I am to an extent. I don't hate myself at all because of it, but at the same time I know what it can do to someone personally and to the people around them (as it runs in the family). I do not like hearing that OCD is a boon, that I am somehow better off because of it. The greater picture is being ignored.

If the person is consciously aware of their disorder and if they can see what it does to them and to other people, it makes living all the more difficult. If other people know about it, or if the disorder somehow results in them acting in some way that deviates so far off from the norm that it makes it difficult for them to function in social situations, they will most likely be bullied or ostracized for it. I haven't experienced the latter so I won't say anything, yet I know the former. At times it feels like I am being shackled by delusion and I am powerless to do anything to stop it. It is sickening. Given a choice, I am not sure there is a single positive thing about it that would deter me from wishing it away. I can only be grateful that I do not have something more severe, and hope that those who do find happiness.

If it goes against your principles, religion, etc. to "spare" (I'm too lazy to make this sound less positive) a child this disorder then I can only assume it is done for what what you perceive to be the greater good. But please keep in mind that the child who will be born will probably be made to suffer significantly because of this decision. To claim that other people may benefit from this child's disability is no justification at all. As of now that logic just comes off as spectacularly selfish to me.

This isn't aimed at you Alpha. It just reminded me of others who say these things without much thought. No doubt you have your reasons.

If my brother could understand you when you spoke to him, how would you rationalise your decision?

From my perspective, I have never felt some greater kinship with those who have had similar disorders, nor would I want someone to go through the same experiences I have. This isn't to say that I know what your brother goes through at all. Yet I wholly believe that, given that one finds abortion viable, they would not wish for others to go through what they have if they themselves wish for "normalcy". And while normalcy is relative, the fact that we live in a society that is incompatible with the effects of various disorders can be very trying for those who actually understand that they have a disorder and wish to break away from it.

[Alpha]

From my perspective, I have never felt some greater kinship with those who have had similar disorders, nor would I want someone to go through the same experiences I have. This isn't to say that I know what your brother goes through at all. Yet I wholly believe that, given that one finds abortion viable, they would not wish for others to go through what they have if they themselves wish for "normalcy". And while normalcy is relative, the fact that we live in a society that is incompatible with the effects of various disorders can be very trying for those who actually understand that they have a disorder and wish to break away from it.

A few questions, if you will.

Imagine you are given a choice between two embryos. One has 'moderate OCD' and is in all respects comparable to who you are now, while the other is 'you', just without the OCD. Which would you choose? If I may presume an answer from your statements, you would choose the one without OCD, as you do not wish others to go through the challenges and stigma you have faced? Dwell on the messages this sends you, and others with OCD. Is it suggesting that your life is somehow inferior? Or is it more to do with the fact that, given the choice, no one would choose OCD over 'normalcy'? What if this was repeated over, and over, throughout society, until OCD ceased to exist? Is this good or bad? As no-one seeks OCD, maybe we would be in a better world. But it would be a less diverse world. I understand that you said OCD is not a boon, but what of diversity itself? And as I said in my OP, these conditions are very unlikely to be ever fully removed from society. You argue that mandatory screens will never take place, so OCD as a genetic trait should always be around. If society encourages parents to terminate children with OCD, what of the children who develop OCD, as they were never screened? Their parents could be stigmatised for 'not caring enough', and the child seen as 'less worthy' - after all, this is the conclusion one would have to reach to select the non-OCD embryo, isn't it?

However, to choose the OCD child is an odd decision. When I said I wouldn't alter my brother's condition, I meant it in the sense that I have adapted to how he is, and I accept him, and love him despite his 'imperfections'. Despite what I've said, I wouldn't wish this on anyone, either. This is why prenatal screening is a dilemma: a state of uncertainty or perplexity especially as requiring a choice between equally unfavorable options. I think the solution is to disallow prenatal screening. To stop selective abortion, and all other implications. But there are positives too - being able to prepare a home for a special needs child is one.

Once again, dilemma. There's no easy answer to any of this, which is why it is so interesting to discuss.

EDIT: Heh, 'ad by Google' get off my page with your prenatal screening stuffs.

[SOLDIER #819]

I'll dissect this one so I make sure to answer as many questions as possible. I hope this doesn't seem argumentative.

I should probably state beforehand that the challenges inherent in OCD are not one of perception. Once I became vaguely aware of the symptoms and how I could not control them, it became rather painful. That is the main issue with OCD. You will think of things and be compelled to do things for prolonged periods of time. Failure to do so will lead to stress as it is constantly in the back of your mind. Doing so rarely ever satisfies the "need" and you end up performing the same action (mentally or physically) over and over. The fact that you cannot escape this cycle also leads to stress as well.

This is different from something like Obsessive Compulsive Personality Disorder, where they are actually aligned in intention with these obsessions or compulsions, and feel good when performing them. OCD deals more with opposition, almost as if obsessions and compulsions take a will of their own. It is very similar to Tourette syndrome, where the urge to do or say this or that is simply too irresistible. That is why I say it is not a matter of perception, as I feel quite apart from it.

Imagine you are given a choice between two embryos. One has 'moderate OCD' and is in all respects comparable to who you are now, while the other is 'you', just without the OCD. Which would you choose? If I may presume an answer from your statements, you would choose the one without OCD, as you do not wish others to go through the challenges and stigma you have faced?

Yes, I would choose the embryo without OCD. The stigma is unnecessary to bring into the question as I have not experienced it enough, nor would OCD be OCD with this stigma alone. I should probably note that OCD is not always something that can easily be seen from the outside, though there no doubt are many cases. My family could see it, but most did not and still do not if I don't mention it.

Dwell on the messages this sends you, and others with OCD. Is it suggesting that your life is somehow inferior? Or is it more to do with the fact that, given the choice, no one would choose OCD over 'normalcy'?

I do not believe me choosing an embryo without OCD says that one with OCD is inferior. Unless, of course, you are implying that I am literally am choosing between two lives. If I believed I was choosing between two lives I would not choose at all, or both if given the option. If I was choosing between two possibilities, however, my choice would be as we both stated. I do not think people want OCD if it can be avoided, nor that they owe much of anything to it, if not nothing at all.

What if this was repeated over, and over, throughout society, until OCD ceased to exist? Is this good or bad? As no-one seeks OCD, maybe we would be in a better world. But it would be a less diverse world. I understand that you said OCD is not a boon, but what of diversity itself?

Going off what I stated at the beginning, I am not sure that OCD can add much to diversity. If it does, it is not simply a quirk. I wouldn't go as far as to say that I am crippled, no way, but I would say that I feel as if I am being pressured by something much of the time. It would almost be akin to (if not exactly) saying that having a stress disorder lends to diversity. Even if it does, at what cost to the person who must experience it to afford it for society? Is the value of an ideal, well-rounded society worth the pain? And if so, why stop with these types of mental disorders? Why not purely physical disorders that cause the owner to suffer?

This is more of a rhetorical question so ignore it if you want, haha. I'm assuming that you simply asked a question and that there is no particular stance implied in it.

And as I said in my OP, these conditions are very unlikely to be ever fully removed from society. You argue that mandatory screens will never take place, so OCD as a genetic trait should always be around. If society encourages parents to terminate children with OCD, what of the children who develop OCD, as they were never screened? Their parents could be stigmatised for 'not caring enough', and the child seen as 'less worthy' - after all, this is the conclusion one would have to reach to select the non-OCD embryo, isn't it?

This is a very hard what-if scenario. I am not even sure if it were to apply to OCD as it is more of internal rather than external experience. In my experience, most of society does not view OCD as being particularly negative. Some will even say it is positive, most likely confusing it with OCPD, as it supposedly bestows various habits that may beneficial. So those normally concerned are those who have it and those close to them, but rarely society as a whole.

If prenatal testing were made available to everyone (as you usually can't fault a person for not having money) yet not mandatory, I still don't think it should infringe on a person's right to choose what to do after. If a person does not believe abortion is right, that they would be taking a life by doing so, then it is impossible to blame them for "not caring enough" in the greatest respect. That is there way of showing due care. However, it is still beneficial to the child and parent(s) as it allows them to prepare for what is coming, and if made available I do not see why they would not take the opportunity.

If, however, they believe that they would be not taking a life by doing so and still went through with having a child with OCD, I would wonder if they actually understood the situation. It would almost be as if they are making light of the issue. As if they're ignoring what the child would go through. I see no benefits to OCD so I can't see why someone would choose to have a child who would have those sorts of problems.

But regardless of whether or not a child has OCD, regardless of whether or not the parents knew of it beforehand, they should most certainly be treasured if born (by whatever definition "born" goes by). It is no longer a matter of worthiness to society (regardless of whether or not OCD has anything to do with "worthiness"). Society is completely irrelevant at this point. This doesn't apply just to OCD either.

I am only focusing on the person and then who the person will affect because of a disorder. If one perceives that they are being hurt by a disorder alone to the point that they would wish to be without it despite its perceived benefits, I rather that disorder be wiped away. What "society" stands to gain or lose is a distant 3rd in this regard, with little bearing on anything.

How you would judge a disorder that does not afford the person fully "conscious" thought as we know it is different, but... well, that is completely up to a person's beliefs at this point. Would you want this disorder yourself? Again, I don't think what society wants should play a role in this particular case. This, of course, is all just my opinion.

--

I rambled a lot, but I hope I answered your questions at least somewhat.

[Tiffany]

Alot of this is reading into things. I personally don't believe that the MMR vaccine causes autism. The guy who first made this claim in 1998 has now been proven that his "test" cases were not random, and he was actually studying a totally different area when he made this conclusion.

My Sister in Law (SIL) and my BF's best friend both work with children who have Autism. I don't want to sound patronizing, as I'm pretty sure you don't need me to spell out for you what autism is, as you definitely know from your brother. However, both of them affirm too that it isn't the MMR that 'causes' it. There is no known cause, which is why it is crucial to put more funding into researching it. I think they were drawing parallels because Autism manifests around the age of 1, which is when the MMR vaccine is given.

My SIL works with two brothers, both who are autistic. The older one is not as (as she puts it) high functioning as the younger one. They were able to recognize the signs/triggers in the younger brother much earlier than they did with the older brother, and were able to get the younger brother into therapy sooner, and now he has a better shot at being an independent adult than his older brother. They saw the signs well before the MMR Vaccine was given.

Also, just to point out too about your brother being a high learner... most autistic kids are brilliant. My SIL and our other friend have always maintained it. Anyways... I know this wasn't the topic at hand, but I wanted to throw my 2.5 cents in with it. I hope I didn't offend you in any way, and I am definitely not trying to dumb down or dismiss autism. Its a cause that is very near and dear to alot of people in my life. We need more research, more funding to better understand it. Although on the flip side, when you have children, will you get the MMR? No vaccinations? Or follow a delayed vaccination schedule? Not trying to argue, I'm just curious.

For the actual topic:

When I was pregnant with Claire, I opted for the Nuchal Genetic Screening. Its an ultrasound done between 11-13 weeks of pregnancy, followed by bloodwork done at 16 weeks of pregnancy. It measures the nuchal fold, if it is larger than normal then there is a high risk of the baby having Downs Syndrome and you can go for more extensive testing (amniocenteses - where they stick a crazy large needle through your belly to get a sample of your amniotic fluid) if you want.

Honestly? I did it because I wanted to know how far along I was. I didn't really care about the genetics side of it all. If they had told me Claire was going to be a Downs Syndrome baby then so be it. Call it God's Plan, call it Natural Selection, whatever. It was meant to be.

I don't find genetic engineering "meant to be". If I had the choice of implanting an embryo with autism, or without... I would choose without. What would I say to your brother? Probably nothing, as I don't have to justify my actions to anyone. On the flip side, if your brother had the choice (or your parents for that matter) to choose whether or not your brother had autism... would they chose that life for him? Would he? They're all rhetorical questions as you don't know what he'd pick, and I'm not going to be so bold as to assume what your parents would chose.

If you want to get into the hokey/mystical side (bear with me here...) In regards to your girlfriend's musing if disabled people are here for a reason:

When I was in the hospital having surgery a friend dropped off a bunch of Sylvia Browne books (I know, I know... but bear with me) I read them and in case you didn't know her theories, one is that our soul lasts forever and each time you live, you choose how you want to live your life. The harder the life, the more you "learn" and you work your way into not needing to learn anything more. I find its similar to the principals of reaching Nirvana.

So she theorizes that the murdered, the tortured, the severely disabled have all chosen that way of life before they were born in order to learn empathy, sympathy... etc etc. She also says that we all have soulmates, and it manifests differently each time you are reborn. One lifetime might be that friend who always "got" you, the next it could be your wife, the next it could be a parent you are particularly close with. I found that aspect of what she wrote very interesting, and it came to mind when you were asking if people would WANT to chose a life of disability.

Its hard to try and voice how I feel about it, without it coming across as insulting to your family. If I were to say "I want my child to have the best possible life" there is always the flipside to that of "So what, my brother has a crappy life???". I think I chalk it up to there is enough hardships in this world that I would never choose a percieved hardship for my daughter. I just couldn't. However, if that is what nature/god intended I would never abort her either. Be her mind totally 'flawless' or be in the cloud of autism, she is still my daughter and I would love her regardless.


Edit:

Just wanted to add too, great topic! It really makes one think.

[DragonHeart]

The real question is how far is too far? I am not personally against prenatal screening either to prepare for or guard against diseases and other conditions, but the very fact that it exists has some unsettling implications should anyone choose to go that route. I'm no conspiracy nut but such screening on the whole can drift uncomfortably close to eugenics on a genetic level. (If you don't know what that is, Google it. Evil, evil, evil.)

Like all such breakthroughs, it can be used for good or not. The problem is that it's not always such a clear cut line. In my opinion screening is just on the edge of that gray moral middle. The process itself is not bad, it's the choices parents can and sometimes do make that concerns me. China is a good example of such a procedure being used for the wrong reasons, as mentioned upthread. What we should be focusing on is how we can better educate people to make informed decisions when faced with the possibility of having a child with any sort of condition. Sadly, not everyone is like Tiffany.

~DragonHeart~

[Walter Sobchak]

The idea of any form of screening is only a means to the ultimate ideal environment, which would be a fully automated fertilization and raising of children in factory farms. If the human race seeks to eradicate the undesirable portions of the genetic code, whether it is ugliness, poll creating, or stupidity, more parties need to be engaged other than the technologically advanced societies. This goes beyond simple screening at the benefit of the parents, and should logically delve into the forced sterilization of the unfit.

[Furore]

Bear with me a little here as I don't really know the subject matter as much as I'd like.

Now, if this screening can help a kid be born without a disability or health condition, great. I can't really see anything wrong with doing that. If I read previous posts right though, there was a mention you could choose between a more normal embryo and a 'disabled' embryo. The Christian values instilled part of me is screaming that it should be left to chance, but the more instinctive part of me is saying survival of the fittest, choose the better embryo. I'd think many people if non religious would have an easier time making that decision. Either way you just don't know what would have happened had the other embryo been picked/randomly selected so there's no use wondering about it.

Also bear in mind I am not neurotypical myself, and had this screening occured at the time when I was just some little piece of genetic material I may have been the one to get nailed. I feel that people who are different can often outshine typical people in some way whether from skills their condition gives an advantage to or as a result of being forced to adapt in some way, but think a more normal embryo could become a healthier individual with less of a burden - some of these conditions do often have medical costs and specialised education costs associated with them.

I feel the same way about terminating unborn babies as I do about abortion in general. I'd do my best to make sure it happened to no offspring of mine, but as far as other people go, it's their decision and one they'll have to live with (and atone for if you have some religious beliefs supporting that).

[unitacx]

However, the ability to screen unborn children also gives rise to many other options, such as the choice of termination of a pregnancy based on the knowledge of a child (potentially?) having a genetic condition. ...

...My own brother is severly autistic (note that this is from the measles, mumps and rubella (MMR) vaccination, not a genetic condition, but... Had his condition been genetic, and we had screened for it, and terminated the pregnancy as a result, I would be a completely different person.

I Disagree and Agree.

1. I disagree because the MMR tie-in with autism has been completely refuted. The only relationship is that autism (a condition the child was born with) manifests itself at about the time of the vaccination series. This is not coincidence, but rather the result of the child showing personality at about the time xe develops xyr own immune system.
2. I agree because prenatal screening for autism only identifies the parents' own personality traits.

Wikipedia identifies some 25 markers for autism, but prenatal screening for autism only identifies the parents' own personality traits. (Autism is 90-98% hereditary and anything detected through prenatal screening would identify 100% herediary traits.) In other words, as a result of stigmatization (e.g., by Auti$peaks' "Jerry Lewis"-type fundraising tactics), parents are made to fear their own personalities manifesting in their offspring!

My girlfriend told me something last night that relates to this. She asked (rhetorically) whether disabled people are here for a reason. While their form of existence may be difficult for themselves and those around them, they are still capable of joy, sadness, and love - attributes which make them just as human as anyone else.

In the case of autism, we are talking about a personality type. If one presumes there is even a small scintilla of truth to the claims that people like Newton, Henry Cavendish, Emily Dickinson, Einstein, Michaelangelo, Stanley Kubrick, Alan Turing, etc. met the "Turing test" for autism, then screening out neurodiversity is screening out more than a word.

[I] Do not accept the claims made that MMR does not cause autism. There is no other explanation why my brother was an advanced learner immediately before his MMR vaccination, and then unable to function mentally immediately after it.

Hmm... did you say he was an advanced learner before he was diagnosed? All that explains is that at about the time of the vaccination, he encountered some issues. The extensive studies, and there were extensive studies, have shown no correlation. That leave the conspiracy theorists explaining that pharmaceutical companies make money and therefore vaccines cause autism. (Note that the whole vaccination theory itself had to be changed from thermiosol to vaccines when thermiosol was removed. But that's really a problem for the tin foil hat folks to deal with.)

[Trodorne]

I whole heartly agree to eat from the jar of mustard pickles.
for one reason the reading involved to take the time to make a compelling argument is not in my timeline. but i will say this. i love mustard pickles. so much that i will not wait for there to be served for dinner.

the thing is with mustard pickles that you will never always end up with a pickle, sometimes you might get a cauliflower, or end up with one of those pickle balls which i have no idea how they are formed.

no matter at that but how ever i pick by pure random chance i will still enjoy the jar of mustard pickles. there is no real point skipping over the cauliflower just to get to the pickles, or some people would suggest not bothering to buy mustard pickles and just save the heart ache of the cauliflower and buy pickles and pour mustard on them. its just not the same.

i may not like cauliflowers at all but i say hey, its life why not enjoy the cauliflower and take the pickles you can get. so how ever you go through your mustard pickles i hope in the end you enjoy them.

[Alpha]

Thanks, Trodorne. That was... interesting.

@unitacx: Here's a time-line.

Brother born July 1994.
Brother developed normally. Out of four children, he was the youngest, and the one who began speaking at the earliest age. His first word was 'birdies'.
At 18 months, he got the MMR vaccine, like 99% of people here.
Day before, he was fine.
Day of the vaccine, at night, he told my mother that he 'is sick'.
Next day, we took him to our GP. He had started to develop a fever. Doctor measures his temperature and tells us to rush him to hospital. He hadn't said a word all day.
Hospital did what they could, but the fever took hold.
When he got over the immediate reaction, he was not the same. He immediately developed classic autistic behaviors (repetition, not looking people in the eyes, etc.), but he had also lost much cognitive function, as in no longer being able to speak (though he could make noise), or to understand what was being said to him.

Bit of a coincidence, don't you think? That's what our GP thinks, and he now is a staunch advocate of the relationship between MMR and autism.

I beleive that the powers that be are just genuinely afraid of the impact of people being scared away from MMR. That is a very real threat. Just the other day, a close-knit community in the north of NZ contracted measles. 70% of these people - who reject MMR - are now sick with measles. I don't want people to not get the vaccine. I do want the medical profession to recognise the very real relationship that exists. This acknowledgment would promote research - is it genetic? Is it safe for my children to get MMR? I'd really like to know, but I'm insane for explaining the cause of my own brother's existence.