[peteretep]

Yah. I've got a 50% chance of having Huntington's. When my parent was first diagnosed with it, me + all siblings were immediately going to get screened. Half of us actually booked to get the test done. But we later cancelled our screenings, and we're all now rather we didn't know.

As I understand, genetic counselling in the case of HD is people telling you over and over again not to get tested. One of the constraints on fertility treatment if you're at risk is that you can't have any procedure that removes the potential baby's right to choose whether or not to be screened.

But in summary:

I've decided (having thought I definitely wanted to know) not to get tested. I'm glad there wasn't a button on 23andMe I could just click to find out. It's a complicated decision, should require some thought, and has life-changing consequences. While I'm strongly pro-choice, I also don't think 7-11 should be selling abortifacient drugs -- just because technology can make some decisions easy to execute on, doesn't mean they should be as easy as clicking a button.

[problems]

I'd much rather that kind of thing be available as clicking a button personally. Getting information that could help you make big decisions is very useful.

[nommm-nommm]

What sort of big decisions does knowing you have Huntington's disease help you make? It's a debilitating disease with no treatment or any way to prevent it.

[Latty]

I mean, all of them beyond the day-to-day?

I plan my life expecting to live to an average age, as I assume most of us do. I save for retirement, I make investments that will pay off at times useful to me.

If I knew I had a serious condition that changes my quality of life and life expectancy, that means I need to change my life plans. Sure, it may not be 100%, but working off the most likely outcome seems sensible.

Not to mention, no treatments right now - if I know I've got something, I can follow developments and if treatment does become available, I can do something. Obviously, you could monitor this if you knew you were higher-risk anyway, without testing, but not everyone knows that.

[lotharbot]

Knowing about a chronic, untreatable, future illness can help you decide whether or not to have children, and if so, whether to have them earlier than you might otherwise have planned. Likewise it can influence you to accelerate the pace of other life plans (like traveling, or setting up a nonprofit in your neighborhood) and scrap other lower-priority plans.

[problems]

That... seems pretty obvious to me, does it not to you? I don't know, I for one would knock back plans I might save for retirement to much earlier in my life.

[majormajor]

Estate planning implications, savings implications, family goals...

Hopefully at the very least even without testing to go from 50% to sure knowledge, that 50% number is enough to get people to create wills/trusts. Save your survivors a lot of trouble with just a little up-front time and cost.

[hawkweed]

I completely understand you, because I'm in the same boat. It's hard to tell what is the right approach. I think that people should be tested. I'm still afraid to do that because I'm 31 years old and already started to experience some symptoms.

Yes, it's not easy decision but if you are not tested you can ruin life of your partner. It's better to prevent passing this terrible disease to your children.

Anyhow, 23andMe cannot tell you whether you have HD or not because they don't have sequences for that.

[moonka]

If you don't mind me asking, why would you prefer not to know?

[moonka]

If anyone else is curious I found the following link that talks about why people wouldn't want to find out. After reading this I can understand why someone wouldn't want to.

https://en.hdyo.org/eve/articles/53

[hawkweed]

Well, it's basically a death sentence for person having this condition. Event though there are some attempts by IONIS HTTRx to find a cure, currently, it's not curable. And it's hard to tell if this disease will ever be curable.

[SEJeff]

Life is a death sentence, unless someone has unlocked the key to immortality. I'm sure there are people who've lived less years than me who have still lived a fuller life than me. Randy Pausch, of Carnegie Mellon University, comes to mind:

https://www.youtube.com/watch?v=ji5_MqicxSo

Just because you're born knowing you're going to die doesn't mean we should all fret about it (unless you're a Nihlist of course, and then it doesn't matter as everything is futile). Knowing you're more likely to pass sooner would hopefully be a good thing in that you'd hopefully spend more time with your family creating memories than useless stuff like grinding at work and trying to climb corporate ladders only to become a senior middle manager in 20 years.

Personally, I would absolutely want to know to pivot my life towards reality. I'd much rather have an educated guess as to what my future might hold given the options vs sticking my head in the sand and "hopes and prayers" for the best. That being said, I can understand how it might simply be overwhelming for some people who wish to remain blissfully ignorant. Best of luck to them!

[kharms]

>One of the constraints on fertility treatment if you're at risk is that you can't have any procedure that removes the potential baby's right to choose whether or not to be screened.

Can you explain that a little more?

[mustacheemperor]

There are fertility treatments that include genetic testing of the fetus that would indicate Huntington's.