Comment by jawns | Hacker News Reader

Comment by jawns | Hacker News Reader

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My family has been affected by another devastating disease with a clear genetic marker, Huntington's Disease. If a parent has the genetic mutation that causes the disease, each of their children has a 50 percent chance of inheriting the mutation. Unfortunately, while there has been some work to stave off and lessen symptoms, there is no cure, which makes it a very difficult decision for someone to be tested for the mutation.

In both of these cases (genetic ALS and genetic HD) I think right now the best we can do is have realistic expectations about what physicians, nurses, aides, and others on a person's care team can do, and also to recognize that there are going to be a lot of questions that don't have great answers yet.

Ultimately, I expect that the greatest breakthroughs for these diseases will come through researchers who only indirectly work with patients, but I have the utmost respect for front-line health care workers who accompany these patients through a terrible situation.

Huntington's is horrible.

You die like ALS when your lungs stop working. Before that, starting in your 40's to 60's you start getting symptoms of schizophrenia and Parkinson's, so loss of motor control and delusional thought processes. If you know you have it you'll eventually not be able to trust your own judgement.

My wife's grandma and uncle's died of it. Grandma was a lady I only met as someone who laid in bed with her eyes open but no movement or indication she saw you. She did still like applesauce by the end. We didn't know if she was there or just locked in.

One Uncle, before he was put in a home was living with his girlfriend.

Why are you sitting at the window? George is bringing me my money. Who's George? My old boss from 20 years ago. You haven't seen him in years, does he know you've moved twice and now live above a store in a very small rural town? Don't ask questions! He's coming to bring me my money today...

Huntington's is not what you want to get.

There's a family genetic mystery as to how Grandma only got the disease. August wedding and a December birth in the 1940's. Who was the real father?

I lost my father to Huntington’s Disease at a young age, and have had to live the 50% inheritance chance reality my entire life. I’ve never been tested for the disease, but I probably should be eventually. I really hope I don’t have it, and only time (or a test) will tell.

Please get tested before you have kids. If you're a carrier, it's possible to avoid passing it to your kids using embryo selection.

Note to anyone who is unfamiliar:

Technically, this approach does not avoid passing the genetic mutation to the children you conceive. Each embryo still has a 50/50 chance of inheriting it.

Instead, the embryos that have the genetic mutation are discarded, and only the embryos without the mutation are implanted.

If you believe that directly ending a human life at any stage, including embryonic development, is immoral or morally problematic, this is probably not an approach you would feel comfortable taking.

"using embryo selection" makes your point with far fewer words.

I don't see how else the word "selection" could be interpreted in this context.

I read the GP as an (oddly worded) effort to raise additional considerations.

Fair enough.

don't you do embryo selection anyways when you use artificial insemination? then this would just be another test if the embryo is viable, making the moral question be the same that artificial insemination already poses.

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