Strollerderby

Removing a gene that causes a fatal disease is the same as eating a healthy diet to prevent cancer, or removing healthy breasts to prevent breast cancer you have that gene for.  I not only think it is ethical to try to prevent suffering and death in children but I cannot imagine anyone playing Russian Roullette with their child's life.  If you knew you could prevent Tay-Sachs before your child is born of course you would say yes to the therapy.  As for IQ and atheleticism, those are still charcteristics that are a combination of genes, nutrition and luck.  Eye color and hair color. All I can say is so what?  What is the harm if you are able to pick your childs' eye color?  Are you afraid parents might all have good looking kids?  If so, what is the big deal?  Not every race or group of people think blonde hair and blue eyes are preferred.  I see no harm in it at all.  We all choose a partner based on physical characteristics, character and intelligence we hope will be passed on to our children.  How is this any different?  I think the real issue here is fear.  It is new, it is scientific.  People dont like change.  

A dear friend of mine has Huntington's Chorea.  She is not yet symptomatic, but she watched her mother die by tiny pieces over the course of over 15 years, and she knows exactly what the barrel of the gun she's looking down looks like.  She's the bravest person I know - choosing to finish college, for example, instead of pulling the covers over her head.  

Anyway, if she and her husband were to choose to have children naturally, there would be a 50/50 chance that any of her own biological children would have, and ultimately die of, the same horrible, incurable, debilitating disease.

Look it up if you're not familiar with it, because it is truly devastating and hideous.  I wouldn't wish it on my worst enemy.

So, if they choose to have children, they'll conceive them in a lab, test the embryos for the gene, and only implant those that do not carry the Huntington's disease gene.  Playing God, maybe.  Choosing to stop a horrific disease with her generation?  Certainly.  

As it stands now, they've decided not to have children, but if they did, I would support her decision 100%.  You can't allow a disease like that to affect your child when the technology exists to stop it.  Even if that technology would cost $20,000 per "try."  

It's really a shame, because she'd make a phenomenal mother.

People who haven't faced the choice really can't imagine what they would do in the face of something like this.  My friend will protect her children from facing what she's facing, even if it means shelling out $20,000 for a questionable medical practice, even if it means not having children at all.

Amy @ prettybabies.blogspot.com

Preventing serious geneticly-activated illness is one of the few situations in which genetic engineering doesn't make me cringe.  Do what you do, but this was wonderful for this family.

Hell yes I if were BRCA1 or 2 postive, I would try my best the ensure my kids were not.  My mom, grandmother, and greatgrandmother all died at 50 from assorted cancers, and my aunt and two cousins have had breast cancer.  I tested negative for the gene, but had I had the means (or the possibilty for the DNA testing had existed before I had my kids) I would have done it in a heart beat.

BTW, no genetic manipulation was involved there. Only old good selection. The girl still got one copy of the gene from mom and one copy of the gene from dad. Just like everybody else. Doctors just made sure that embryos with defective paternal copy were not implanted.

Re; Shannon's comment.

Thanks so much for your suggestion, I'm sure that there are tons of people who are interested in having children who are completely unaware that this thing you call adoption exists.  Some people, including people who eventually adopt, like a dear friend of mine, really yearn fo a biological link with their child.  If you want to adopt an infant, which is what most people want to do.  It is very hard, even for child of different race, even foreign. Unless you want to adopt older kids from foster care or developmentally disabled kids.  Not a mandate, my foot, people are always doing this to folks who are infertile or are genetic carriers of a terminal and painful illness. Of course, on top of their pain, and grief, they are supposed to cure all the world's ills, by adopting, whether that is a reationship they feel they can handle or not.

This isn't genetic engineering...it's genetic selection.  If I had a similar familial history I would absolutely investigate this route to clear my family line of a debilitating disease!  Assuming I could afford it, of course.

I'm involved in responsible dog breeding as well.  Being "responsible" in dogs means doing genetic testing on breeding stock before they have a litter to ensure that the puppies will be as healthy as we know how to make them at this time.  How is this any different?  I don't see why any less should apply to our own species.  In the case of humans, however, suggesting that someone simply remove themselves from the gene pool (as we do in dogs) isn't always a desired option.  Procedures such as this gives some of these people a different choice.

Shannon, I love your posts here, and I always respect your opinion. I can see where kimora is coming from, though. To write "there's this thing called adoption," knowing that everyone has heard of the practice... it sounds judgmental. Adoption is simply not for everyone, or at least not a first choice for everyone (although it may be for many). I had trouble conceiving, and did so only with fertility treatment. I also get sick of the implication that I "should" have adopted instead. My reasons for wanting biological children are many, from my own issues with being adopted myself to what I can only assume is a natural (for some people), biological urge to reproduce. So many times I have read the opinion that people who are having trouble conceiving (or in this case, have other concerns) should adopt, and that they are being selfish or want kids who look like them. It is so much more complicated than that.