How Cool Is This? Progress in Someday Treating Chromosomal Abnormalities

Updated on July 18, 2013
J.B. asks from Boston, MA
9 answers

Just read this article and thought I'd share. I know that the research is preliminary and they are probably years away from this turning into something applicable, but this story literally brought tears of joy to my eyes. Science is freaking amazing sometimes!

So for the obligatory question...if DS were one day treatable in utero - if they really found a way to shut down that extra 21st chromosome - and you were carrying a baby with DS would you opt for treatment? Or do you think that's changing God's plan (or whatever you believe is behind who we are, if anyone or anything) for who your child is supposed to be? I've heard DS parents say that they wouldn't change a thing about their child, but that's also in our time, where treatment or change isn't an option. What if it really were an option?

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D..

answers from Miami on

It's a wonderful thing to be able to do. It will take at least a generation for it to be common because there are people who will always say that if someone is born with something wrong, they should have to stay that way. It reminds me of people who are dead set against helping a deaf person hear by putting in a cochlear implant.

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M.R.

answers from St. Louis on

Although I applaud every parent out there that has a child with a genetic disability or Down's Syndrome, I believe that coping and dealing with the long term care of children with DS is very h*** o* families both emotionally and financially. It is never easy. Finding good schooling, child care, medical care, and sometimes therapists is no small task. You also have to look at all of the care and commitment a parent takes on with a DS child. Most will always reside with their parents or some member of their family or need supervision or help to make ends meet out their in the world. It is a lifelong situation of need and care. This why I have great respect for parents and families of children with DS. The commitment level is something that can never be ignored. For me, personally, I would use scientific means of treatment if it were available to me if I was carrying a known DS child. I would opt for that treatment to stop or reverse the condition if it was medically possible and safe. That's just my opinion though. I would choose to see the help to fix the chromosomal defect if it was an option. I have a sister-in-law with DS. She is 33 years old right now and does not function at a high level. She will spend the rest of her life with my mother-in-law, and also the rest of us in the family as she is unable to care for herself by herself. We love her dearly but we also know how hard it is to provide for her and get her the levels of care she needs on a daily basis. It is also exhausting for my aging mother-in-law and I watch her selflessly take care of my SIL each day....we all help and we all know that someday her care will be left in our hands for life. Having said all this, I asked my mother-in-law this same question and after a brief pause she said that she would absolutely seek a medical option or treatment to stop DS if she was able to do that when she was pregnant with my SIL. She then said that she does wonder what her daughter's life would be like and the things that she would be doing had she been born without Down's Syndrome. But we will never know that so we just embrace every day we have with my SIL and make sure each day is a good one for for her. That's what we do because we love her!

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M.J.

answers from Milwaukee on

This will be a fun discussion in my Law and Ethics class!

In my younger days I worked with developmentally disabled adults and one of my fave clients had down syndrome. He was in a group home because his parents were to old to care for him anymore. He was happy though. He died just after I left of heart problems. To change his genetic makeup in the womb would have saved his family lots of grief but we all loved the person he was. He would be a different person. Maybe not as happy. Maybe not as "God" intended.

All very fascinating stuff now that technology and health are coming together. I am ready, however, for a shut down of all genes that cause cancer!!!

4 moms found this helpful
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K.C.

answers from Los Angeles on

Didn't read the article yet, but from what you described, it sounds amazing if it can truly become a successful procedure.

And yes, I would absolutely 100% do it. I know myself, and I know my limits, and I don't think I could handle raising a child with special needs that affect brain development. If there was a way to help my baby in utero so that they would be a typically developing child, there's no way I would turn that down.

I give huge props to parents of special needs children. I know those children bring just as much - if not more - joy into their lives as typically developing kids do, but it takes a huge amount of physical, mental and emotionally energy. Those moms are far stronger than I am.

ETA: As others have said, I would never do an in-utero procedure to change hair color, eye color, size of the nose, etc. Only those procedures that have a significant impact on quality of life or brain function.

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B.C.

answers from Norfolk on

You just can't tell how people will react.
There's a procedure now that will give deaf people some ability to hear - and some deaf people are against it because being deaf is who they are - they identify with it - and they don't want to change that and they don't feel they need to be 'fixed'.
Also, I think people might worry about the concept taken to it's illogical extreme.
Fixing something like sickle cell anemia or tay sachs - sure, I don't think anyone would have any problems with that.
(and very hopefully, solving one problem will not create another problem - there are interdependencies we don't understand).
But then how much of a leap is it to then decide you want your child to have blue eyes or a certain hair color : designer offspring?
Or how about a cure for male pattern baldness?
There are people who'd pay a LOT of money for that.
But there's nothing life threatening about being bald.
And don't forget - if someone's genes are fixed, does that mean the fix will be passed on to THEIR offspring?
Some people get bent out of shape about genetically modified corn and other plants.
How are they going to feel about genetically modified family members?

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S.T.

answers from Washington DC on

maybe it's the gods' plan for humans to develop treatments that prevent debilitating diseases.
this sort of thing WILL be an option, as will designer babies.
everything's got good and bad, doesn't it?
but we're humans, and we like to tinker.
khairete
S.

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B..

answers from Dallas on

I don't think I would, because I (personally, I don't care what others do) don't believe in tinkering with conception and children. I would never even get IVF, I would just adopt or not have children. I can't see myself doing that with chromosomes. Although, we are done having children. Like I said, it's just a personal belief for myself, what other people do is their business.

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A.C.

answers from Wichita on

Oh, this is a tough one! I DO think that our scientific progress that we are making is amazing. The problem is that every person has their own line in the sand that they feel shouldn't be crossed.

Generally, I am all for technological and scientific advances that help to promote a more healthy life. Some people immediately jump on board the train of how wrong our advancements are, but these are the same people who forget that they (or a close family member or friend) may have already benefited from these advancements (think of basic treatment for many illnesses).

I am NOT for advances where a human life is destroyed or people are able to pick and choose the attributes of their child simply because they want a boy/girl with blue/green eyes, etc. Some people might not see the difference, but to me it is a huge difference....the difference of a certain preference for a physical trait in their child vs. the choice to do something that could help their child live a longer more quality life.

I am afraid that I don't know how I would choose to react if I were in this situation, and I had a choice. I am sure I would be praying to God quite a bit for His guidance.

Oh, and let me say in advance that I mean no offense to anyone by my post....this is one of those topics that could get touchy really quickly depending upon the person reading about it.

1 mom found this helpful
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G.B.

answers from Boise on

I just read a very long article about proven methods to regenerate and regrow organs like the kidney and liver with stem cells, bone marrow cells, cord blood and embryonic cells. The problem is that it can become a moral issue , especially with embryo cells.

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