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» Scarleteen Boards: 2000 - 2014 (Archive) » SCARLETEEN CENTRAL » Sexual Ethics and Politics » Disease-screened child born to carrier of Alzheimer's?

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Author Topic: Disease-screened child born to carrier of Alzheimer's?
lemming
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What I thought was a really interesting take on this story.

To sum up, a woman whose entire family fell prey to a rare, early-onset form of Alzheimer's disease decided she wanted a child, and had embryos screened for the disease. An Alzheimer's-free embryo was implanted, and she recently gave birth to her daughter.

Jennifer Foote Sweeney, editor of Life at Salon, calls this "a procedure that offers a woman several years of child-rearing that she will completely forget in exchange for the potential emotional devastation of a child."

I'm inclined to agree with her article.

What do you think?

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~lemming, Scarleteen Advocate

"Years ago, I was an angry young man/I'd pretend that I was a billboard/Standing tall by the side of the road/I fell in love with the beautiful highway..."-Talking Heads, "(Nothing but) Flowers"


Posts: 3156 | From: Austin, Texas | Registered: Jun 2000  |  IP: Logged | Report this post to a Moderator
Confused boy
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While I believe that new medical technology should be regulated beyond patients ability to come up with money, in this case I feel it is their perfectly reasonable decision to have a child. As far as I can see, there are two parents only one of which is likely (but not certainly) going to suffer from a relatively young onset of Alzheimers. This still leaves one parent, fully able to look after the child. Statistics do show that a child looked after by only one parent tends to have more problems than those with 2 but that should not be emphasised too much because they are ONLY statistics.

These parents have been willing to have very complex treatment in order to have a child without the gene, and surely this demonstrates that they want a child so much they will look after it well. So it is really all down to the specific situation so that is not a problem in itself.

One of the greatest rights of humans (if such things exist) is the right to reproduce. When you deny this for genetic reasons (which is what this almost amounts to), you get very close to the theory of eugenics which was famously practiced by Germany during the Nazi era.

Fortunately, a far better system has been discovered to remove such genetic malfunctions from the gene pool without enforced sterilisation or mass murder and this is exactly what the couple are doing. They have screened the embryo so that this malfunction will not be passed on to any future generation. As long as they have taken the necessary steps to prepare for the mothers decline, which may or may not happen, this sounds perfectly reasonable to me. Plenty of children have had to suffer other problems while they grow up: divorce or early death of a parent for whatever reason. There is simply know way of protecting every child from these traumas which are just a risk in being alive. It is all luck of the draw and to pretend that we can control the situation children grow up
in is misguided. Most of all, we cannot decide who is fit and unfit to bear a child.

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'An Anarchist is a Liberal with a bomb' Trotsky


Posts: 711 | From: England | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
lemming
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I suppose the problem I have with this situation is that it's more than likely that this child will have to grow up dealing with the slow decline of her mother's faculties.

Yes, things like that happen all the time, but usually they're unexpected. In this case, it is probable that this woman will develop early-onset Alzheimer's even though she may be asymptomatic right now, simply because it tends to strike in the fourth decade of life, and she's only in her early thirties. I don't think it's really right to have a child knowing that.

But I wouldn't say that we should have regulations prohibiting it, either. It was their choice, and even though I think it was a poor choice, I won't inhibit them from making that choice.


Posts: 3156 | From: Austin, Texas | Registered: Jun 2000  |  IP: Logged | Report this post to a Moderator
Tel'kella
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If both parents want the child and are willing to accept that the father will end up being completely responsible for her (which does seem to be the case), I don't see a problem with their decision. Surely it's kinder to the little girl to ensure that she won't have Alzheimer's. My main concern here is that this case and others like it are opening the door to letting people design their children. Preventing a disease is good. Making sure your child has the hair colour and eye colour you prefer, or trying to engineer a more intelligent child, would in my opinion be a waste of scientific resources, and the fact that it may become possible scares me a bit.
Posts: 37 | From: Canada | Registered: Dec 2001  |  IP: Logged | Report this post to a Moderator
Confused boy
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Or might it be possible to describe the Alzheimer gene as a characteristic of someone even if it does have its draw backs. I believe some very intelligent and creative people have suffered from Alzheimers. Would they have been the same people without that particular gene? Of course, I know of some physical diseases that are very rare but very horrible and in my opinion should be screened out. But Alzheimers is a little more complex. Well I suppose if people have the money...

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'An Anarchist is a Liberal with a bomb' Trotsky


Posts: 711 | From: England | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
Bobolink
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This subject is somewhat personal to me as my mother developed early onset Alzheimer's disease at about the age I am now. I watched her die over a period of about 20 years, beginning slowly when she fully realized what was happening to her until her last 10 years which were basically in a vegitative state. I also witnessed the terrible emotional strain it put on my father as he watched his beloved wife slip away from him. She was institutionalized for the last 10 years of her life as she needed 24-hour care.

Now my father who is 82 is watching me and my sister very carefully to see if either of us develops symptoms. Genetically, both my sister and I have a 50:50 chance of contracting Alzheimer's disease. Any method of genetic screening to rid the world of this disease has my approval.

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We can't solve problems by using the same kind of thinking we used when we created them.

- Albert Einstein

[This message has been edited by Bobolink (edited 03-02-2002).]


Posts: 3442 | From: Stirling, Ontario, Canada | Registered: Sep 2000  |  IP: Logged | Report this post to a Moderator
Aria51
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Well, speaking as the mother of a child with a genetic disorder, I have to say that given the same opportunity, I would do as these parents did. Raising a child you know will have a difficult life because of a genetic disorder is extremely hard -- at times I feel a bit selfish for having brought this child into the world. He's a smart, healthy little boy NOW, but he has Neurofibromatosis and later down the line he could develop tumors that could make him blind, deaf, prone to seizures...

So I have to wonder, why, if given the opportunity to completely phase out disorders such as this one, would parents choose to let nature -- and bad genes -- take their course? My family is prone to a ton of things, and all of them could very well be fatal. I had a grandmother die of breast cancer, and now one of my aunts just had a historectomy and both breasts removed. This could affect any future daughters I have, so why wouldn't I want to be able to have a child free of the faulty gene? Why would I want to bring another child with NF into the world?

I don't think that what they did is selfish in the least; they used the resources available to them and were able to have a child who wouldn't have to lose their mind and independance at an early age.

I didn't really want to play the 'mother of a genetic defect child' card, but this is something I feel strongly about.


Posts: 1287 | From: Missouri | Registered: Jul 2000  |  IP: Logged | Report this post to a Moderator
tasha
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quote:
Originally posted by Aria51:
Well, speaking as the mother of a child with a genetic disorder, I have to say that given the same opportunity, I would do as these parents did. Raising a child you know will have a difficult life because of a genetic disorder is extremely hard -- at times I feel a bit selfish for having brought this child into the world. ..

So I have to wonder, why, if given the opportunity to completely phase out disorders such as this one, would parents choose to let nature -- and bad genes -- take their course? ...why wouldn't I want to be able to have a child free of the faulty gene? Why would I want to bring another child with NF into the world?

I don't think that what they did is selfish in the least; they used the resources available to them and were able to have a child who wouldn't have to lose their mind and independance at an early age.



I don't have a problem with the fact that the couple, knowing they might otherwise give birth to a diseased child, had the embryo screened. But I don't think that the point here is really whether or not it's inappropriate or morally wrong that the parents had their child screened; of course it's 1000 times better to have a healthy baby if possible than to give birth to one that you know will be sick.

But for me at least the issue is whether or not it was selfish or i guess you could say "fair" of this couple to have produced a child in the first place. They may have, through screening, been able to ensure that the child will be healthy, but I think the problem here lies more in the health of the parents... as Bobolink mentioned, watching a family member slowly deteriorate can be heartbreaking and painful for a spouse or children, not to mention emotionally traumatizing for a child.

The parents may love this child to death, and they have on the one hand made a responsible choice by having the embryo screened, but i feel like perhaps they should have given more thought to how their child may react to the mom's slow decline. I don't know if i would have made the same choice if I had been this couple.

But, since (thankfully), there are no rules about WHO can or can't reprdouce, as far as i know, it's their choice and their decision.

As a side note--does anyone know, are there or have there ever been laws ~forbiding certain people to reproduce? Like the mentally ill? I seem to vaguely remember reading somewhere that there was something where a guardian could sign to have a mentally ill person sterilized, but i don't remember the details...And wasn't there also something where male sex offenders could have their sentence reduced if they agreed to be sterilized? I remember hearing about that, too, but i can't think of where i heard it! Sorry if i muddled the facts on that one... That opens up a whole new can of worms, huh?

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Posts: 68 | From: Brooklyn, NY (Ev,IL right now tho) | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Bobolink
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Tasha, what you describe is known as Eugenics. You can find some of the history of it here. Eugenics in North America was primarily practiced on mental health patients in the care of the state. Such people were routinely sterilized. In Nazi Germany, mental health patients were executed by the state.

With that in mind, some people practice voluntary eugenics by chosing not to have children to avoid passing on a defective gene. Embryo screening allows people who may carry a dangerously defective gene (e.g Tay-Sachs, hemophilia) to safely have children.

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We can't solve problems by using the same kind of thinking we used when we created them.

- Albert Einstein


Posts: 3442 | From: Stirling, Ontario, Canada | Registered: Sep 2000  |  IP: Logged | Report this post to a Moderator
   

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