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

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