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Comment by intopieces | Hacker News Reader

I commend the author for coming to terms with the disease and deciding to face it again if his child were to inherit it.

Having said that, it is not the decision I would make. I would, with 100% certainty, biopsy the embryo and eliminate those with the disease, whether I had experienced it myself or not. And I wouldn't think twice.

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Why? If it's ok for you to discuss, of course.

I would not choose to have a child knowing that his life would be full of suffering. Hardship is not necessary for individuals to be “good”. As well, from a practical standpoint, if you’re going to subject a woman to the pain of IVF, far better to have that pain result in a healthy child.

How do you define "suffering"? From the story I don't see anything for what I would use such a strong word. Psychologically, some sort of "specialness" (and author tells us it's both bad, and good for a kid) is typical for many conditions which nobody would even call a disease, such as congenital poor eyesight. Physically, diabetes, or just a cosmetic defect which requires a series of operations could be way more challenging. Don't you think your reaction is just because this particular case is super rare, and scary for its unusualness?

The medical tests, the social isolation, the uncontrollable sexual and rage impulses, some of which lead to criminal behavior. Those rise to the level of suffering, all of which could easily be avoided at conception through biopsy and elimination.

It isn’t “just” because this particular case is super rare and scary that I would choose to eliminate those embroyos, it’s that I would have the option to prevent it.

Would I do the same for embryos with diabetes, poor eyesight or cosmetic defects? Probably not, those are pretty manageable.

I'm not sure I you've read my comment in full. This condition is (according to what story tells) more easily manageable, both medically, and socially, then many cosmetic defects, and some cases of diabetes.

I’m not sure how to best quantify “easily manageable” but if that’s the case, I would opt for eliminating those embryos too. Depending on the severity of the defect, the viability of other embryos, and the cost to start over if it went that far.

I have no interest in having a child that requires extensive medical care and would prevent that if I had the option.

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