Thread about a thread sorry - but genetic counselling

(90 Posts)
boringnickname Sun 29-Apr-12 09:32:22

Having read that horrible thread about genetic counselling, i wanted to ask the question - Does genetic counselling have a use? The consensus seems to be that it is a bad thing? It does have a tinge of eugenics about it?

I think there is a definate value of being able to screen for genetic conditions, especially if there is history. Not so a decision to terminate can be taken but so that parents can be prepared if there is a likelihood of problems but also to know there are no problems? rather than go through a whole pregnancy not knowing?

Also, i do not know if there is anything like this available but i would hope that one day, there woudl be the possibility of gene therapy in utero, this can only be a good thing?

I am sorry to start a thread about a thread, but that was never going to be a rational discussion as the OP was so vile, but i do think that genetic counselling/screening is useful.

I had tests for downs like im sure many of us had, being an older mother it was reassuring for me, if the results had shown a high possibility of my child having downs syndrome i would have still continued with the pregnancy but i would have been prepared.

I am really glad you started this as although I understand why the original thread was deleted ( mentioning an individual), I actually still want 'ignorant' threads to be started as people in real life think like this and it is a chance to change opinions and educate.

Thing is as soon as you start to screen and identify certain conditions, you also start to eliminate those conditions because they are seen as 'problems'. The number of children born with Downs Syndrome has fallen since screening was introduced. OP - you sound very sensible and you know you wouldn't terminate - but lots of people would and either position is imo valid. The other thread has been deleted but the OP seemed to be labouring under the impression that hard and painful decisions and events could be avoided by counselling. Sadly that isn't the case. Genetic counselling identifies risks, it can't solve them - so parents either proceed with knowledge, proceed to pre implantation diagnosis of embryos (assuming that's possible for the condition concerned) which carries it's own ethical burden or parents terminate a pregnancy.

There's no getting away from the eugenics aspect here - it runs through every choice.

Yes, I had a test for downs syndrome for DS as he had a heart defect discovered at 20 weeks.
I had all the counselling ( this quite a long time ago) and decided to go ahead with the pregnancy.
Although obviously they had got the heart defect correct, he didn't have downs syndrome.
I don't know how I feel about it really, I suppose I wanted to tell my story of how they got it wrong and the trauma that I went through ( and afterwards as I didn't feel really happy for some reason).

I do feel as if that puts a judgement on someone who wouldn't continue though and I don't think that is right either.
With regards to the other thread, I still think that people should be allowed to express unpopular opinions ( without mentioning names) rather than it being kept hidden. The opinion still exists and I would rather that people discussed it.

2shoes Sun 29-Apr-12 09:49:41

yabu for stating this thread.
what is the point of it, do you want to cause more hurt?

And yes boringnickname I had the test as I wanted to be prepared.

boringnickname Sun 29-Apr-12 09:53:22

Yes, i agree with you Northern, it is a very difficult area. I suppose that the flip side could be that parents with genetic conditions may choose not to have children anyway if there is a significant chance of the condition being passed on. Those parents could benefit because they could get the reassurance that their baby is clear from the condition, of course if it isn't there is a crap decision to be made. In all honesty i just don't know how I feel about it, but i do think that there is the potential for treating certain conditions in utero and that really pushes me to think that it should continue.

boringnickname Sun 29-Apr-12 09:55:35

2shoes - not in the least - why would i do that? I think that a sensible balanced discussion of the subject is useful. Of course it is emotive and im wanting to avoid the termination discussion as much as possible. The point of the thread is to highlight that genetic counselling is a positive thing, for many parents.

McHappyPants2012 Sun 29-Apr-12 09:56:24

why start another thread.

people with medical problems know they have got them, and be told if there condition is herditary or not.

also i don't think you can prepare for a baby with disabilities, you can read every book and speak to many parents going through the same. However every child is diffrent even those with disabilities

YouOldSlag Sun 29-Apr-12 09:56:38

I was put in the position of having to decide whether to continue with a pregnancy.

It was a serious chromosomal problem that indicated quality of life would have been almost negligible. Length of life was indeterminate but would would have been single figures if the pregnancy made it that far.

I ended the pregnancy and that decision will follow me to the grave. The labour and birth was the blackest day of my life.

Calling it "eugenics" is hurtful, but probably true and doesn't make me feel any better about it all. But then nothing ever will.

Just tread carefully on this OP. I know you don't want to step on anyone's toes but it's a very emotive issue.

2shoes Sun 29-Apr-12 09:56:46

then why post in AIBU?
why start a thread that will cause hurt after the last one.

QOD Sun 29-Apr-12 09:59:27

What are pre marriage blood tests in the USA testing for incidentally ?

McHappyPants2012 Sun 29-Apr-12 10:00:46

YouOldSlag i am sorry for you loss, what a tragic thing to have to make a descision on.

boringnickname Sun 29-Apr-12 10:01:12

tough i also know someone who was told her baby would have downs but didn't. I also know someone who's sister was told her baby had downs, he did, her sister found it useful to emotionally prepare.

youoldslag I am so sorry for your loss - i think you make such a good point, you did what was right but what a horrible position for you to be in.

2shoes - AIBU just because its thread about a thread

Not wishing to cause hurt in any way

AfricanExport Sun 29-Apr-12 10:01:27

I tried to answer that thread but it was too late. firstly I think the whole argument falls apart really when one considers that Genetic Counselling DID NOT EXIST in 1989, when the boy was born. Just like I did not have an IPad when I was 10! The whole idea was incredibly naive.

Anyway, I had Down's Syndrome testing and I must be honest if it had been positive I probably would have considered a termination. I realise that people will think badly of me for this but my experiences in life are different and we are in this country alone with no family and not many friends for support.

I do agree that Gene Therapy in utero would be fantastic and to be able to rid ourselves of genetic diseases would be an incredible step forward for mankind. Of course it would take hundreds of years for this to happen as many many people would not go for this and entire cultures/mindsets would need to change.. which happens over time I think.

QOD Sun 29-Apr-12 10:04:10

I just googled it (why didn't I do that first?) and apparently it is to check for syphilis!!

Heyyyho Sun 29-Apr-12 10:04:40

What exactly is genetic counselling? confused

McHappyPants2012 Sun 29-Apr-12 10:06:26

AficanExport i don't think badly of you, there is many reason why people don't continue a pregnancy with a baby with down syndrome. It don't make you a bad person

boringnickname Sun 29-Apr-12 10:07:02

African, i do not think we are looking at hundreds of years at all, i would be very surprised is we aren't very close to those sort of break throughs. On a very simplistic level, if there is a faulty gene, it is at least feasible to introduce a functioning one which if done at an earlier enough stage of development, will overcome the pre-existing defective bit of DNA. Of course not all conditions are caused by a single mutation and chromosomal abnormalities that cause conditions such as downs would not benefit from this.

claw4 Sun 29-Apr-12 10:07:54

The problem is, it could be viewed as hurtful to people with existing disabilities, it could also be viewed as discrimination by some. Screening out any disabilities to create a 'non disabled' world.

Having said that i am all for freedom of choice too, its dangerous ground to decide exactly where that choice should end and who is responsible for deciding.

boringnickname Sun 29-Apr-12 10:10:47

I think Heyyyho, it is where decisions are made based on what is known about the genetics of certain conditions, whether to screen for those conditions in the foetus and then decisions made based on the results. So could be as simple as a couple where one person is a carrier for a specific condition would receive advice on the likelihood of passing that condition on. This may be done pre-pregnancy, there would be tests to see if both parents were carriers etc, so they may decide to not have a baby based on those results, its not just about genetic screening of the embryo. That is how i understand it at least.

Pagwatch Sun 29-Apr-12 10:12:51

I don't have a particular problem with the subject of this discussion. But placing it in AIBU, whatever the tenuous reason, is grim.

boringnickname Sun 29-Apr-12 10:14:06

claw4 - that is right, it is not nice to think about screening out disabilities, especially when those, whilst often severe, still leave, with medical support quality of life. Sadly, there are conditions where a baby might go to term and have a very short and painful life (I am talking hours/days) and for me that would be a clear decision.

MrsMicawber Sun 29-Apr-12 10:15:13

I haven't read the original thread but genetic testing has a huge role to play in Jewish marriages and from what I understand, muslim marriages as well. Both of these cultures families tend to marry relatives (sometimes first cousins and often second cousins). Ashkenazic Jews like me often carry the genes for Tay sachs and other horrific illnesses. (I don't know about sephardic Jews and Muslims). In our (ashkenazic orthodox jewish) community any couple getting married are routinely tested for the main genetic diseases so they can make an informed decision, before they even get together in some cases (this is where the marriages are arranged) or before they have children in other cases.

Having said that, I have refused the downs syndrome test etc as once I'm pregant, I wouldn't terminate if my baby was less than perfectly healthy. Obviously, if a heart defect etc was suspected and something either needed to be treated in utero or medical staff needed to be prepared for treatment immediately after birth I would allow whatever investigations were necessary.

I may have missed the point here bec I missed the original thread, but those are my thoughts.

boringnickname Sun 29-Apr-12 10:15:42

Pagwatch - you are right, will report and ask it to be moved or deleted, whatever MNHQ think is best i suppose

boringnickname Sun 29-Apr-12 10:18:47

MrsMicawber - thanks for that, that is a really interesting post and has focused my thoughts. I think that genetic counselling may be getting confused with genetic screening. I dont think anyone could argue against what you are describing.

ahhhhhpushit Sun 29-Apr-12 10:19:43

Oh FFS no need to delete this thread. The original yes as it named and discussion a person. This is just a discussion about a subject. How ridiculous.

On the topic itself - if there were known major genetic problems in my family, yes I would get tested and then make a decision with my DH as to whether to proceed to have children and not test, proceed and then test and make a decision or not proceed at all. All just being sensible surely?

2shoes Sun 29-Apr-12 10:20:03

it shouldn't be in aibu
there is a whole topic to discuss stuff like this, think it is called ante natal, testing, choices.
it was started so threads like this were in a much hidden topic, and then didn't hur people who have disabled children

boringnickname Sun 29-Apr-12 10:22:34

2shoes I have asked for the thread to be moved - i am very sorry if i have upeset you. But i think you have an excellent point, because you raise the issue that whilst everyone agree that screening for conditions that make survival unlikely and unacceptable amounts of suffering is sensible, where do you draw the line?

OutragedAtThePriceOfFreddos Sun 29-Apr-12 10:28:26

I don't see why the thread should be moved or removed, it is a valid discussion that affects society as a whole, not just the individuals that have been touched by it in some way already. These things should be talked about, and if some people find it to be a subject that will upset them, then there is a very good 'hide' function on this website that I use frequently. Just because I find something hurtful doesn't mean others should be prevented from discussing it, or should be told where on a website they are allowed to discuss it.

I think there is a place for genetic screening, of course there is. If it can prevent suffering and aid parents, it has to be a good thing. It just has to be handled ver carefully and sensitively, and parents should always be able to feel supported in whatever choices they make for their own families.

MrsMicawber Sun 29-Apr-12 10:29:08

Thanks Boring

claw4 Sun 29-Apr-12 10:30:33

Boringnickname - I was offered genetic counselling after my son received his dx of ASD.

As far as im aware there are no proven links between genetics and ASD, so why was i offered this? Maybe i would have been given some inaccurate info.

Which conditions are we talking about that can be screened for? "Sadly, there are conditions where a baby might go to term and have a very short and painful life (I am talking hours/days)

boringnickname Sun 29-Apr-12 10:34:26

I dont know what conditions exactly

Am shock that you were offered genetic counselling for that though, that is madness

That's interesting claw, I wasn't given the option for dd after diagnosis but I was told that there is a genetic 'association'.
I am not sure what that means but I took it that they strongly suspect a genetic link but are unable to give finite proof at the moment.

MrsMicawber Sun 29-Apr-12 10:37:42

Outraged There was a dispatches a while ago called 'when cousins marry'. It focused on the Muslim community, but I was really surprised that Tazeen Ahmad completely ignored the sophisticated worldwide screening system the Ashkenazi community have in place.

Called 'Dor Yesharim', or 'straight generations' (odd name if you ask me) all teenagers are tested routinely at the age of 17/18. Their results are entered into a database and they are allocated a unique number, without being told whether or not they are carriers (to avoid discrimination). When a match is suggested, they call the helpline and quote their number along with the number of the proposed match and they will be told if they are genetically compatable. The system is worldwide and has hundreds of thousands of users.

claw4 Sun 29-Apr-12 10:40:08

Boringnickname - as far as im aware every woman is given a scan at 18+ weeks to assess how likely it is that baby has a condition or health problem.

So i assume we are talking about screening parents before they have a baby?

ToryLovell Sun 29-Apr-12 10:40:10

Actually I think this is a valid discussion.

DS has ASD as well as another genetic condition. When he was diagnosed with hereditary condition they said that they would offer counselling when he was old enough to consider starting a family. Whether his ASD will mean he is able to fully understand the implications kind of muddies the water a little.

DD is a carrier but not a sufferer so will also be offered counselling. At the tender age of 8 she said (prompted by discussion linked to DS' homework) "but mum if you'd had this counselling, you might have chosen not to have {DS name} and his life is amazing even though he has (syndrome)"

OutragedAtThePriceOfFreddos Sun 29-Apr-12 10:42:05

MrsMicawber, my best friend had to go through that when she got married as she and her husband are Iranian. They live here, but had to do it to make their marriage considerd valid for when they go back to Iran to visit family.

claw4 Sun 29-Apr-12 10:43:50

Toughasoldboots, yes it was even written into ds's dx 'mum has been advised about genetic counselling'

Yep the cause of ASD is still unknown, although lots of contributing factors are 'suspected'. I should have taken them up on the offer, out of interest.

MrsMicawber Sun 29-Apr-12 10:44:40

outraged as part of a large scale organisation or privately?

The point I was making is we have a huge system that works, and it was completely ignored in the Dispatches investigation into the terrible consequences of 'when cousins marry'.

boringnickname Sun 29-Apr-12 10:45:26

I would assume genetic screening would involve screening of both parents and embryo.

I am willing to bet there is a genetic link with ASD, it would be sensible to do the research, which i am sure is being done, to establish what that might be - that opens to doorway to researching into therapy, just like any other condition.

MrsMicawber Sun 29-Apr-12 10:48:45

Boring we do not screen the embryo, for us the screening involves testing both parents to check that they are both not carriers for the same disease.

boringnickname Sun 29-Apr-12 10:54:56

MrsMicawber - Of course, however i think people are taking issue with genetic testing in utero. It is a very different decision to decide whether to have a baby than to decide whether to terminate a pregnancy

claw4 Sun 29-Apr-12 10:56:00

Boringnickname - ok lets assume that ASD is genetic, both parents test positive and there is a risk that their child could have ASD, then what?

ASD like a lot of other conditions comes in many different forms ranging from severe, to quite mild.

MrsMicawber Sun 29-Apr-12 10:59:04

I would take issue with testing in utero. Claw from a religious point of view, we bypass your question entirely by testing before marraige.

OutragedAtThePriceOfFreddos Sun 29-Apr-12 10:59:14

I'm not sure MrsMicawber, I'd guess it was arranged privately, but I could be wrong. It was 6 years ago now and i cant remeber everything! The couple themselves aren't practicing Muslims, although other members of their family are, and I guess they would consider themselves lapsed Muslims. When their families were arranging their Muslim wedding (which they had to have in addition to their civil ceremony in a registry office) they both had to go off and have a blood test. She didn't tell me all the details as they didn't see it as that big a deal, but I do remember her getting the call to say that the marriage could go ahead. It seemed like more of a formality really. Just something they had to do to have their Iranian wedding the same way she had to get a licence to have their civil wedding.

KateSpade Sun 29-Apr-12 10:59:53

I understand and agree with genetics councelling, especially if their is something that will seriously alter the quality of life. However it seems to me, sometimes that people who do terminate is because they cannot be bothered themselves with all the extra effort/support the child would need.

Would you, yourselves rather be born disabled, or been aborted?

I know its a tough decision, and not to be taken likely, but my mother nearly aborted me (because she didnt want me) and i alway think back to that.

I do not agree with in any way shape or form, aborting babies because they have downs syndrome. Testing, yes fine. Find out whats going on. But killing a baby just because they have downs syndrome? Thats an awful terrible thing to do.

KateSpade Sun 29-Apr-12 11:00:37

*lightly sorry, my computer auto-corrects words like an Iphone!

diddl Sun 29-Apr-12 11:02:47

But as well as the fact that some conditions vary from severe to mild, also do many/some/all of these tests tell you for sure that a foetus has a condition, or just a % chance?

claw4 Sun 29-Apr-12 11:04:08

MrsMicawber, sorry i must have missed your earlier post, what is it that you test for?

My question to boringnickname was purely hypothetically of course.

MrsMicawber Sun 29-Apr-12 11:05:55

KateSpade there is the added factor that the results of testing in untero are often wrong. My friend caught a virus in early pregnancy and was told her baby would be a vegetable. She went ahead with the pregnancy and while her child has microcephaly and another condition - where one side of the body is rigid and the other side has no muscle tone, I can't remember what its called - she is by no means a vegetable and can smile, gurgle and stand up using a frame (at 2 years).

outraged I understand if they saw it as a formality, but the reasons for testing are good ones!

MrsMicawber Sun 29-Apr-12 11:07:18

claw we test for
Tay-Sachs disease
Familial dysautonomia
Cystic fibrosis
Canavan disease
Glycogen storage disease (type 1)
Fanconi anemia (type C)
Bloom syndrome
Niemann–Pick disease
Mucolipidosis (type IV)
Gaucher's disease

MsGee Sun 29-Apr-12 11:09:46

I have been offered genetic counselling following TFMR because of anencephaly. I want to do it because I don't want DD to go through the same thing in the future.

I have had the papers for 9 months and not done it yet. Part of me doesn't want to deal with it just yet. We've already taken the decision not to ttc again because the previous experience was so traumatic. I was amazed at how little '' counselling' goes along with the tests. We were told to just try again with extra folic acid, that I'm at greater risk of mc and if it happens again I can just have a termination at 12 weeks.

youoldslag (((( ))))

KateSpade Sun 29-Apr-12 11:10:53

Yes, that aswell. Mrsmicawber I bet your friend feels keeping her baby was the best thing she ever did. I think it brings it home when you hear about things like that.

Years ago, probably about 35 now, my Auntie had a baby with downs syndrome. As soon as he was born they took him off her and said she didnt have to even look at him, and he would be taken to a ''mental home'' and she could forget all about it. Obviously she didnt, and he brought so much joy to everyones lives. Yes at some points he was very ill, but that didnt matter to her at all.

boringnickname Sun 29-Apr-12 11:12:13

claw4 - good point. I don't think there would be any suggestion that parents would teminate a pregnancy based on that information. So like you say, that begs the question what is the point? For me, i can only see at this stage that it would be to gather information to enable identification of a "common factor", but as you say, it is more likely to be FactorS, in the plural. Understanding the causes of a condition is half of the battle in treating it though. There are genetic therapies available for conditions such as cystic fibrosis. If a condition has genetic origin there is potential for gene therapy. I am not sure if ASD would qualify as a potential candidate, but it would be good if it was? wouldnt it?

I agree with you to a degree as of course ASD, isnt a condition that would prompt a termination, but as a parent of a child ASD do you feel you would have benefitted from knowing earlier on that there was an issue? in terms of how you felt about it or putting strategies in place to help your son? I am aware that the earlier it is picked up, the better the outcome in terms of development etc? My daughter struggles with reading, i am concerned she may be dyspraxic but the school have told me it is too early to dx, i would very much like to know one way or ther other so that i can do what i can to assist her, if indeed she needs it. A genetic test would give me that answer, id like to have it.

tryingtoleave Sun 29-Apr-12 11:13:58

I think posters are confused about what genetic counseling is.

I have been to see a genetic counsellor twice. The first time was because I wanted to find out if there was a chance I would pass on a genetic condition that was in my family. I was not pregnant at the time.

The second time was because I found out that my mother carried the brca gene that increases your risk of breast and ovarian cancer. I found out that I carried the gene and as a result I was offered screenings for breast cancer which I wouldn't be eligible for otherwise.

MrsMicawber Sun 29-Apr-12 11:15:04

Yes, of course, KateSpade and her child is very much loved and part of the family.

OTOH DH has a cousin who was put into a home at birth because he had DS, this was 30 odd years ago. It needs to be remembered though that the incredible amount of progress that has been made in the last 30 years is what makes it usual to keep DS children at home, in terms of medical attitudes especially.

boringnickname Sun 29-Apr-12 11:15:06

KateSpade - that is such a sad story, well not sad because your aunt didn't abandon her child, but sad that it was what she was expected to do. Out of sight, out of mind - horrible sad and unnecessary

KateSpade Sun 29-Apr-12 11:16:58

Yes, actually i've just realised i have got a tad mixed up. Its where they take the potentially harmfull material out of the DNA. In order to stop the baby having those conditions. isn't it?

Jumped the gun a bit their.

fullofregrets Sun 29-Apr-12 11:16:58

It's a difficult subject.
I was screened carefully (not for genetic conditions) but because of being diabetic. It means I am much more likely to have a baby with conditions such as cerebal palsy. However, although I wanted to know I don't think I would have terminated unless I'd been advised that my baby would have no quality of life or would suffer. It is diffifllult for the doctors to be that specific though.

My friend terminated a pregnancy where she was told that the baby would only live for a matter of hours and would be very deformed. I think in that instance I would do the same.

It's an awful situation to be in because it is filled with so much uncertainty. It is also an extremely contentious issue.

tryingtoleave Sun 29-Apr-12 11:17:07

It makes sense to offer genetic counseling to a parent of an asd child. The parent might want to know if it is hereditary and what are the chances of a second child also being asd. A genetic counselor could tell them what the current position of the science is (even if that means telling them that it is unknown). Nothing to do with screening a foetus.

Madsometimes Sun 29-Apr-12 11:18:42

There is a use for genetic counselling, but many people like me with genetic conditions do decide to go ahead and have children anyway.

Genetic conditions vary hugely, and IMO people's perception of them is skewed by how much experience they have. For example, if two deaf people have counselling and are told their children have a high probability of being deaf, they will probably accept the news a lot more calmly than if an average hearing couple is told this.

Not all genetic conditions entail serious disability. Most people with genetic conditions live their lives, go to school, college and work and do what everybody else does. Having a family is something that many people want to do, and people with genetic conditions are no different.

Perhaps some people think my dh and I were wrong to have children knowing that there was a 1 in 2 chance of passing on a dominant genetic disorder.

tryingtoleave Sun 29-Apr-12 11:19:42

No, katespade, genetic counseling is just talking to a geneticist. They tell you what is known about a condition, what tests might be available, the pros and cons of taking tests. In my case they seemed very concerned not to push me either way.

ToothbrushThief Sun 29-Apr-12 11:24:44

As trying to leave says... genetic counselling is about looking at your genes to see if you carry something which might pass to a child.
Ante natal screening is about screening a pregnancy and making decisions following the results.

They are different but similar and many of the issues cross over, because genetic screening gives a risk but no cure...other than to futher test a foetus and then act (if this is your decision)

As I said on the other thread I think it's hypocritical to declare all testing 'eugenics' since nearly every pregnancy is screened ante nataly in one form or another.

I worked in this area and spoke to many mothers who claimed they would continue a pregnancy but wished to be 'informed'. Nearly 100% terminated the pregnancy when they had bad news.

The parents with a disabled child were often those that had extensive screening to look at their risk second time around -this is because for many of them they knew that no matter how heroic they are (and they are) their resources are finite and another child with special needs might mean they could not cope.

This is a terribly emotive subject but it's good to discuss in a calm and measured way. For too long it's been covered up. Many women make choices and then have to live with guilt. Yet evidence is that their contemporaries would have made similar choices.

Having testing does not make you an ogre. It does not mean you are practicing eugenics. It does not mean you wouldn't roll over and die for your beautiful loved DC with special needs. It's a complex decision and causes many parents much angst

Don't judge a man until you have walked a mile in their shoes is a saying which springs to mind.

Puffinsaresmall Sun 29-Apr-12 11:26:15

We had genetic counselling after our dd was born. She was born with a slight 'abnormality' and in some cases that can indicate a rare condition that usually means a child does not survive into their teenage years.

It was very stressful waiting for the appointment and then the results (all clear) and the geneticist seemed annoyed with the hospital for referring us as it had caused a lot of worry for what was a very slim chance of anything being seriously wrong.

However, if she had not been given the all clear then at least we would have been able to start treatment straight away.

ToothbrushThief Sun 29-Apr-12 11:30:06

The other thread was despicable btw because it spoke of an individual and made a sweeping judgement.

I realise that many will take issue with my post and it does 'generalise'. it's almost unavoidable and I'm quoting anecdotal experience.

My sister has severe disability. I was screened in pregnancy, aware that it was almost like saying I wouldn't wish her to be born. It caused me much distress because that is so far from the truth. She is a loved treasured member of our family.

I think everyone has the right to make their own choice on this one way or another.

Toothbrushthief- what a brilliant post. Far more eloquent than anything I could have said.

thegreylady Sun 29-Apr-12 11:30:53

I had genetic counselling because both my dh and my dad had MS and I wanted to know the risks for DC. I know several people who have been screened for genes related to breast cancer so that their dds could have early screening.

KateSpade Sun 29-Apr-12 11:30:55

It was literally that boring Its shocking to hear something like that now. I cant believe they used to do stuff back then!

Ahh, thats what i originally though it was, toothbrush & leave but i have heard about DNA screenings. I agree with that, as its a bit more like prevention. & i think its a good idea to do all the tests you can to see whats happening, its like going into it with your eyes wide open. Its the people behind the decisions & what they choose thats sad!

But, i suppose, who am i to judge anyone really?

MrAlbertoFrog Sun 29-Apr-12 11:30:59

I didn't see the original thread so not sure what the background to this thread is. Just wanted to add a few bits of info.

There is definitely work being carried out into the genetics of ASD as there is a genetic component (I have worked in this field), but it is generally not a simple case of 'if you have the mutated gene you will have ASD' more that a mutation in a gene gives a predisposition to ASD. And I have not seen anyone suggest prenatal diagnosis of ASD related genetic changes!

'Conditions where a baby might go to term and have a very short and painful life' which have genetic causes that can currently be tested prenatally would include triploidy, Edwards or Patou syndrome (currently tested alongside the Down syndrome tests if amniocentesis or cvs are carried out), and also chromosome rearrangements resulting in large imbalance of genetic material, infantile Spinal Muscular Atrophy..there are more.. but still the decision on whether parents want the information and what they choose to do knowing it should be up to them IMO.

There is a survey by the Wellcome Trust (charity) at which is trying to collect people's opinions on what the UK should do with genetic data and how people feel about genetic testing. I would recommend anyone with a strong opinion to have a go at their questionnaire (I don't work for them).

LalaDipsey Sun 29-Apr-12 11:40:28

Claw & Boring - my dh has a chromosomal abnormality which only causes him to have a very low sperm count - however any dc we have could be one of 3 types
- not inherit any part of the abnormality
- inherit and be like dh - 'normal' apart from fertility issues
- be extremely poorly due to chromosome abnormality - to the extent of dying within a few hours/days of being born
Since we had to go down the ivf route anyway due to his sperm count we also chose to have the embryos genetically tested to 95% rule out option 3
We now have 3 dc and chose not to have additional testing at 12 weeks as would not have aborted at this rage regardless. We thought anything else might show up at 20 weeks if there was an issue to give us time to prepare.
We have 3 beautiful dc now - 1 is genetically normal, 1 will have fertility issues like dh and the 3rd hasn't been tested yet as she didn't have enough cord blood.
The genetic counselling we received to help us make our decisions was great.
Very interesting and very emotive topic.

boringnickname Sun 29-Apr-12 11:40:34

Thanks for that MrFrog. Will have a look. For me, it isnt an issue in terms of myself in pregnany as i am not having anymore children, but it is certainly very interesting.

ToothbrushThief Sun 29-Apr-12 11:40:43

Thank you Toughasoldboots. It's a subject which causes me much angst and is not black and white

KateSpade-there is I believe high level (experiemental?) work looking at whether it's possible to correct a gene issue. If we could and could remove conditions which cause painful conditions, life limiting illnesses etc would you do it? Does it equate to eugenics and wanting to rid the planet of anyone less than perfect?

2shoes Sun 29-Apr-12 11:44:46

thank you mn hq for moving this.

claw4 Sun 29-Apr-12 11:45:05

Boringnickname - "If a condition has genetic origin there is potential for gene therapy. I am not sure if ASD would qualify as a potential candidate, but it would be good if it was? wouldnt it?"

I see ds as whole, which includes his difficulties. Ds is who is he, he isnt defined by his disability. Which bits could i take away, which bits would i leave? Difficulties as well as strengths is what makes a person who they are. When i see ds being bullied for being different for example i dont think i would like to change ds, i think i would like to change the bullies. So would screening for ASD (if it were possible) help or hinder the discrimination or negative views that already exists, hinder would be my guess.

"as a parent of a child ASD do you feel you would have benefitted from knowing earlier on that there was an issue? in terms of how you felt about it or putting strategies in place to help your son"

No i dont think it would have helped, all screening can do is tell you there is a risk. I already knew there was a risk, i also knew there was a risk of miscarriage too for example, as its common knowledge. It wouldnt have told me what difficulties he or i would experience.

"I am aware that the earlier it is picked up, the better the outcome in terms of development etc?"

As you know from your dd's school that depends entirely on what others are prepared to do about it, not screening. If my ds was diagnosed with ASD in the womb, he still wouldnt be getting any more help that what he already gets. Its all red tape.

raspberryroop Sun 29-Apr-12 11:51:06

If I had been aware that ASD/ADHD had a genetic link I would probably not have had any more children. I do not wish away my two youngest but now on the verge of a second and possibly 3rd diagnois and the long years of fights with CHAMS,SS and LEA's wish i had known.
Many of the people who shout eugenics remind me of the Anti- abortnists in America who do not have to live with the consequesnces of the births and are very often in Sates that provide the least welfare to women and children.

claw4 Sun 29-Apr-12 11:56:20

Laladipsey, as i said earlier in the thread i am all for freedom of choice. Where i feel slightly uncomfortable is who decides where this choice stops and how much actual 'scaremongering' it would involve.

When ds received his dx of ASD, i was told there was a chance of another ASD child and offered genetic counselling. I didnt take them up on this offer, but i was already told this as if it was fact and it wasnt.

Littlefish Sun 29-Apr-12 12:19:36

Dh and I received genetic counselling. In the course of fertility investigations it was discovered that he was a cystic fybrosis carrier. I was tested to see if I was also a carrier. Dh has a rare mutation which can cause infertility so, as we were going for IVF anyway, we wanted to consider all the issues around genetic screening of embryos to ensure that any child we had did not have cystic fybrosis. Our other alternatives were to take the 1 in 4 chance that our child would be born with cystic fybrosis, or abandon the idea of having a child ourselves. Neither of these were options we were prepared to follow at the time.

When dd is about 14, we will talk to her about the possibility of her being a carrier of Cystic fybrosis, the need for her to be tested, and also, depending on thwt result, the need for any partner with whom she wishes to have children, to be tested. 1 in 25 people is a carrier so she needs to be aware of the risks.

Trickle Sun 29-Apr-12 12:23:29

I think where we are at with technology genetic councelling is only helpful in some instances. We often just do not know enough about a conditon and there are very rarely definate answers people can have. It's all probablilities and risk taking really - what are you prepared to risk for yourself and your unborn child. There is no certainty.

I speak as someone who hasn't had genetic councelling - but I do have a condition with a 50:50 chance of passing it on - though this was just my risk - as my husband also has some characteristics of the conditin it's possible the risk is higher. However the varriation in how it can effect you ranges from being a good circus performer to constant chronic pain and near permanent wheelchair use. I'm in the near permanent wheelchair use catergory - but that's down to medical mismanagement since I was at least 7 - it's a variable I hope will not effect my child and so genetics are not everything. We are only just in the infancy of epi-genetics and even then environmental factors still have further concequences even in inherited conditions.

Much more complicated than most people would think and some would liketo believe.

AfricanExport Sun 29-Apr-12 13:11:03

BoringNickname : I realise we are there - what I mean is that it would take hundreds of years to eliminate the genetic diseases because people will not be keen on taking it up. The majority of the world would not look at this as an option for a 100 years - they are still developing nations after all. There are people out there who still believe that taking a photo steals their soul. It will take a long time...

Madsometimes Sun 29-Apr-12 14:44:35

Genetic diseases can be reduced, but not eliminated by testing, whether it is screening of embryos for IVF or testing of foetuses in utero. DNA is an changing molecule, and spontaneous mutations are key to how life on earth has evolved. Therefore parents who do not carry a given condition can still give birth to a child with it, because of a mutation that occurs spontaneously.

KateSpade Sun 29-Apr-12 16:33:47

I would prevent a child of mine having a debilitating condition, but if i found out after id got pregnant it had something wrong with it, i wouldn't kill the child because of that.

I cant imagine what id tell people who knew i was pregnant (i wouldnt go shouting it in the streets) but do people just say 'it had xxx wrong, so i decided to terminate?'

DorisIsWaiting Sun 29-Apr-12 16:48:36

Having had a child with a chronic condition with a known genetic link we had dc3 tested. Largely as 2 children in the same family with the condition can make each other more unwell, and we needed to protect the dd we already had. Had the testing come back postive then we had ( as a couple) agreed to terminate. I can not fully express just how awful waiting for the results were and my heart goes out to those who do have to make that difficult decision,

ToothbrushThief Sun 29-Apr-12 17:13:09

KateSpade Sun 29-Apr-12 11:30:55

Its the people behind the decisions & what they choose thats sad!

But, i suppose, who am i to judge anyone really?

You're no one. Make your own decisions and stop having snide pops about 'killing' babies at those poor people who have faced tragedy. There are a multitude of reasons why parents choose not to continue a pregnancy. You have no idea.

YouOldSlag Sun 29-Apr-12 23:10:18

KateSpade, you said "but if i found out after id got pregnant it had something wrong with it, I wouldn't kill the child because of that. "

Let's hope you are never put in the position that you find so easy to judge hypothetically.

I have been in that position ( see my earlier post upthread on page 1). I find your phrasing of it insensitive. I did not kill my child. I let her stay asleep rather than facing a life that may have been hell for her, not to mention short, that's if she even made it to birth, or lived beyond that.

YouOldSlag Sun 29-Apr-12 23:13:07

Oh and Kate, in case you can't imagine what to tell people, I will say two things:

1. You won't care what other people think because you will be consumed with grief, loss and guilt.
2. People who love you understand that test results came back and were bad news, so the pregnancy was terminated. Nobody demanded explanations so that they could judge us and decide for themselves if we were right, we just had kindness.

boringnickname Sun 29-Apr-12 23:20:22

I totally agree with you youoldslag and i am so very sorry for your loss. Everything you say is right.

Kate - it is not useful to use such emotive language "kill the child" hmm

I am sure people would rather they dindn't have to make these decisions at all, but as harsh as it is for those going through it, it is better for the babies that they can. No mother would let their children suffer, and who gives a flying fuck what other people think in those circumstances.

tryingtoleave Mon 30-Apr-12 00:27:09

Agree, that Kate doesn't understand.

I was in a similar position to toothbrush - my sister has a genetic condition that can range from being totally debilitating to not really a problem. My sister is somewhere in the middle. I would not want to have a child with that condition, not because of me, not because of my sister, but because of the potential misery of seeing another child live as unhappily as my sister has. It is not a matter of looking after a baby with a troublesome condition. It is not about wishing my sister away. It is a matter of thinking that that child is going to turn into an adult, is going to have their own life and that life might be crap. My sister cannot have a relationship or marry, she couldn't look after children, she can't have anything except a menial job, she can't live independently. But she still wants all those things. She sees her (very few) friends from school marrying and starting families. She sees people at work being promoted above her. As a result she is angry and depressed. Because she is angry with her life she is angry and destructive in her relationships with her family, estranging the people who do care about her.

leedy Fri 04-May-12 14:58:34

"do people just say 'it had xxx wrong, so i decided to terminate?'"

Yes. Yes, sometimes they do. Like these brave women:

Really, your posts have been remarkably insensitive to people who get potentially disastrous antenatal test results and make what they consider to be the best possible choice for their families, whether it's not wanting to carry and deliver a dying child, or not wanting to bring someone into the world who will never have the mental facilities to live independently after they're gone, or alternatively "wanting to say goodbye in person" or embracing the challenge of a special needs child. I have the utmost respect for whatever decision they make, and I would hope others would do the same for me.

OliviaLMumsnet (MNHQ) Sat 05-May-12 09:44:01

We have moved this thread to Ethical Dilemmas

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