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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.

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

We have moved this thread to Ethical Dilemmas

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.

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.

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.

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.

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.

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.

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,

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?'

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.

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...

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.

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.

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.

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 11:45:05

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.

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

thank you mn hq for moving this.

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?

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.

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.

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).

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?

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.

Toughasoldboots Sun 29-Apr-12 11:30:34

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

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.

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