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.

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.

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