a new super race?

[rosieglo]

Re the article in the guardian about the baby that was successfully screened for the breast cancer gene and the controversy about 'designer babies' - what's the fuss? I'm thinking that breeding out illness and disabilty is a great thing. Improving intelligence also; hopefully the smarter the future generations are the more likely they will find ways to halt our destruction of the planet and stop fighting. What's wrong with wanting fitter, stronger, cleverer and healthier children? And I think it is so wrong for a deaf or blind parent to actively seek out a way to pass their disability on, I cannot begin to understand how they could want to deprive their child of the ability to hear music or see the world around them.
hmmn - for me it's a pretty straight forward matter.

I think Cote has a point, and I say that as a completely 'out' pro-lifer. It's a perfectly logical pro-choice position to agree with screening and the consequences.

Thank you.

Cote - agree in a developed country with the ability to make a much earlier choice. I would not judge women in less developed countries. I'd need to walk in their shoes and all that.
That said if a woman decides to abort I think the reason is her business and hers alone.
If it's I don't want to be preganat, or I have three kids I can't cope with twins, or I don't have enough family support to manage a disabled child...I think it is the call of the woman who will carry and parent that child. I have faith in women and their ability to make the right choices for them.

I don't get the objections of those who are pro-choice except for whatever their pet reasons are.

I hear the argument 'You're choosing who is worthy of life and who isn't, and that's wrong'.

But the pro-choice argument is based on that decision. I don't agree with it, but I'm not sure I understand the partial objection.

I have been hanging fire as I am torn on this subject. I am unlike Wannabe in that it seems pretty obvious to me that my dd's disability is a genuine disability: she's in pain. I can't truthfully say that I wouldn't wish the pain not to be there.

(I know I said something along those lines earlier- but I think that was pushing it. Pain is not a positive thing. Though growing to greater emotional maturity through pain is a positive thing).

The problem is, only a few people with this gene go on to develop a pain condition. For others, being hypermobile can be a very positive things (look at David Beckham, Darcey Bussell- even dd has very graceful movements when she is not in too much pain to move at all). SO it would require super-super genetic screening to say, "this child has the gene and I can look into the future to see that for her the negatives will outweigh the positives". Until such a time, I think we'd prefer to leave well alone.

Anyway, it is well known that there is a 50% chance of passing this gene on, so dd will have take her choice: is it worth getting pregnant or not.

But I also see what Jute is saying: when there is a difference in protection of foetuses, there is also a difference in how they are valued and more pressure will be put on parents to have children with faulty genes aborted.

That's how I feel Kay.
It is the woman's choice and hers alone. You either respect women enough to accept that or you don't.

As I understand it, in this particular case, the parents underwent IVF. The embryos, 11 of them, were then screened by removing one cell at the 4 cell stage, and examining it for the lethal breast cancer gene carried in the father's family. Of the 11, only 5 were found to be clear of the gene (I think 6/11 is a very high rate, considering the mother's genes are diluting the mix). This genetic breast cancer had carried off multiple members of the father's family, and understandably they were not all that keen on having to take their daughter to mammograms from the age of 13 onwards, bearing in very likely certainly that had she carried the gene, she would have fallen prey to the disease in her teens, requiring breast removal and chemotherapy before she'd even reached adulthood and the likelihood of ovarian cancer to look forward to and watch for, assuming she survived the initial breast cancer.

The 6 clumps of cells found to carry the gene were discarded. Two were re-implanted, one baby girl was born.

No babies were aborted.

The outcome was the birth of a child who will not probably need painful treatment from her early teens for a disease that could kill her at 21. Can anybody really blame the parents? I truly can't.

I am pro-abortion actually. But it's the difference in protection that gets to me.

But there's no protection for any embryo is there?

My objection is based on the view that disabled babies are less valuable than non-disabled. Disability prejudice is so ingrained that people don't even realise what they're saying half the time. I don't think people should be forced to have disabled babies, but I think a move towards screening embryos pre-implantation is one that should be question. I think assumptions that we would want to rid ourselves of disability should be challenged. And I think money could be better spent on treatments and support.

My discomfort doesn't come for the act of termination or screening itself. It is discomfort with the assumption that that is what we all want.

Deaf culture is a rich well established culture. The ease with which the OP wants to sweep it all away, without question without consideration is frightening. That's a whole group of people. Don't they get a say?

My objection is based on the view that disabled babies are less valuable than non-disabled. Disability prejudice is so ingrained that people don't even realise what they're saying half the time. I don't think people should be forced to have disabled babies, but I think a move towards screening embryos pre-implantation is one that should be question. I think assumptions that we would want to rid ourselves of disability should be challenged. And I think money could be better spent on treatments and support.

My discomfort doesn't come for the act of termination or screening itself. It is discomfort with the assumption that that is what we all want.

Deaf culture is a rich well established culture. The ease with which the OP wants to sweep it all away, without question without consideration is frightening. That's a whole group of people. Don't they get a say?

well, exactly. There's no protection at all for embryos. Some people believe that if an embryo can be shown to be one thing, that is more of a justification for disposing of it.

Is it maybe the issue of a 'disabled' embryo being discarded for something which is inherent, rather than an abortion which is entirely based on a woman's current circumstances? (trying to understand the distinction in position here, btw)

Agreed, Jute.
I feel a woman should be told about disability and what it could really mean - not just the assumption that you'll want to get rid.
But after that I think it is up to the woman in question and not for other peopl to judge.

jute, don't get me wrong, I'm actually 100% against screening. I think any kind of grading system on what constitutes 'worthwhile' humanity is an abhorrent idea.

I just don't understand the position that says 'I am pro-choice - except for screening out disability'. I can't see that 'being unwanted' is any different a reason to not be born than 'being differently-abled'.

I understand your point Kay.
But I feel that it's all part of the same continuum. If a woman goes to all the trouble of screenig embyos we have to respect her as someone who has put a lot of thought into it and not judge.

Sorry. Litchick, slipping from one subject (IVF and embryos) to another (foetuses) here

and definitely uneasy with the assumption that we should all want abortion if carrying a disabled child

I was made to feel rather irresponsible when I refused an amnio, until I pointed out that given my age, there was a greater risk of miscarriage due to amnio than of my actually having a child with downs

midwife totally uncomprehending when I said the amnio wouldn't "cure" downs anyway, so where was the point of my risking it; she had assumed that I would have an abortion: I imagine if I had been less forceful I would have felt quite pressurised at this point

I am slightly confused by the changing position of rosieglow on this thread

at first I seemed to understand that she was advocating termination for any foetus that could be shown to carry a disabled gene- which I was uncomfortable with

then she seemed to be talking about IVF and the discarding of embryos- which I have less of a moral problem with but more of a practical- IVF is very expensive and not for everyone; besides, she seemed to hint that this would have been a good solution for me and my dd (not!)

then she was talking about genetic curing of a disease while keeping the baby- nice but a long way off, we can't even cure cancer

Sorry that was in answer to your penultimate post.

Sorry that was in answer to your penultimate post.

I think you're misunderstanding what i mean kayharker, Being pro-choice my argument isn't really about individual choices. As you identify it can't be. It's with the assumption that this screening is definitely desirable. It's with the assumptions made in the OP really. Although it's hardly been discussed the comments about deafness shocked me, because there is such a strong culture associated with deafness.

Now if you're asking me what choices would I make with a deaf child I'm not sure I don't know, however, if you're asking me whether I think I should be telling deaf parents that deafness is undesirable then no I don't.

I object to the assumptions that many non-disabled people make about disability. For example the assumption that 'oh of course they'd rather not have that disability'. It's patronising and not something we should just assume. If we do that then we are in some way stating that we think their disability somehow makes their life worse. And that's not always the case. Not our judgment to make. IME people with disabilities have an individual viewpoint. Knowing one person with disability x who thinks that his disability is a PITA doesn't meant that another person with the same disability will feel the same way.

But by the same token Jute it's not for the happy mothe of a disabled child or indeed a perfectly happy disabled person to tell another woman what she must do.
As I say, you either respect women and their choices or you don't.
That said, I agree with Cory that the assumption you will abort if a foetus is disabled needs to be turned around - but we can't allow the current situation to undermine women's rights.

No, indeed. I agree, btw, that Rosieglo appears to have modified her position as she's gone on.

I've had periods of disability in my life that I've actually been grateful for, and I know my husband, who is partially sighted, is quite emphatic that he regards his disability as something quite beautiful. It means that he both appreciates and safeguards the little vision that he does have, and I find his eyes wonderful to look at, even though they don't conform to the norm.

While I'm still not sure I fully understand the pro-choice-with-exception position, I do completely agree with you about the assumption that we all agree that all disability is undesirable and we would be better off without it.

Erm I haven't said what anyone should do, I never have, never would. If you search previous posts of mine under old names I have said I think that women should have counselling before invasive testing/before termination for disability to allow them space to make the right decision for them.

There's an assumption that termination is a choice without consequences. I know now that for me termination would have left me far more screwed up than caring for a child who will need lifetime care has (which has made me very happy in fact), But would I have had the confidence to make that choice in a first pregnancy with everyone around me assuming I'd opt for termination (a position many find themselves in). I have no idea.