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Comment by allsystemsgo | Hacker News Reader

This would make me anxious. I remember reading about someone who learned from 23andMe that they had a terminal disease or something like that, and it drastically altered their life. I'd rather just live in ignorance.

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I ended up learning I supposedly have a 40.1% chance of getting Alzheimer's Disease. It hid the result and asked me if I really wanted to know. I am not sure who in their right mind would not want to know (though maybe that is my Alzheimer's talking). Such a thing would drive someone crazy.

I have just kept living my life the way I have been. It was scary at first. At least I know I ought to eat right etc...

I think if you are too afraid to know what your genes might say about your future then yes 23andme might not be a good fit.

Now if they would just add an edit mode...

But there's lots you can do to reduce your risk for Alzheimers. It's good that you know! (1) Exercise (2) Take lots of curcumin. Capsules - not just curries (it's an extract from turmeric).

References: http://alzheimer.neurology.ucla.edu/Curcumin.html http://www.ncbi.nlm.nih.gov/pubmed/20182027

Alternatively, eat lots of cake so that you die of something else first.

I could make turmeric/circumin cakes and try for one or the other.

Thanks for the info! I will keep and eye on those studies and hit the gym :)

23andme user here (one of the first).

If the disease in question could be hard to handle mentally/emotionally, they specifically include a warning that is very direct and says "Are you sure you want to know this?".

That's basically telling them with ambiguity attached. I'm not sure it's much better.

They should do a product that only tests for preventable, curable conditions.

Telling someone they have a high risk of breast cancer or bowel cancer is helpful: they can get regular checkups.

Telling someone they have a high risk of Parkinson's or MS is just cruel.

I'm not sure how that well that's going to work, with genome sequencing now below $1000. The data is going to be out there, putting your head in the sand isn't going to solve your mortality issues.

It shows that message regardless of whether you have an increased risk or not. The presence of the message is not an indicator either way, so if you'd rather not know you simply ignore it.

Once you are asked "Are you sure you want to know this?" you are already making the person very anxious.

Now they would certainly want to what their problem is. Who would be comfortable when they are told, they have a terminal disease and are they happy not knowing what that is?

Except as mentioned, you get that question regardless of the result.

Would you prefer they didn't ask?

I've used 23andMe, and it told me I have twice the risk of developing Alzheimer's disease when I'm older. Considering that I've lost a few family members to Alzheimer's, it worries the hell out of me. Regardless, this has triggered me to research a bit about the disease and ways of potentially reducing the risk.

It does make you anxious, but when you have that knowledge, you feel the need to do something about it.

I mentioned this to another person in the thread. Worth repeating. Take lots of curcumin every day for the rest of your life. It has been shown to bind to a-beta protein and get cleared from the brain. The overproduction of a-beta causes alzheimers. India, where they consume lots of turmeric (curcumin is an extract from turmeric) has significantly lower incidence (very very low) of alzheimers. You'll be fine.

When dispensing medical advice that's this actionable, not well known, and promising miracles, please link to the research. If someone sees this and follows your advice to the exclusion of conventional treatment, and you're wrong, that would be very bad.

Downvoted.

I linked earlier in the thread. Thanks for the downvote.

This is an absurdly irresponsible thing to claim.

wouldn't you rather make necessary arrangements and preparations for your family w that knowledge?

edit: i don't mean this as a criticism, genuine curiosity.

I think it's an incredibly personal decision that you don't really have a place to criticize. I happen to agree with with that post as well, as long as it's not communicable, I'd 100% prefer not to know if I had a disease that was going to kill me.

If you're in a position to be responsible for others, shouldn't you already have a safety net/final arrangements? Diseases aren't the only things that can kill you unexpectedly, and even without a family I have life insurance, a living will, and all my other arrangements made.

If you're in a position to be responsible for others, shouldn't you already have a safety net/final arrangements?

Yes, you should, but many younger people don't. In your 20's, 30's, even 40's, you feel like death is pretty far off and you can get around to that "boring" stuff later. You may have some basic life insurance, but maybe you haven't really thought about other details. There are also things you might want to handle that aren't necessarily paperwork, such as catching up with family members.

Additionally, if you ARE someone who has that stuff in order (FWIW, I mostly do), you might decide to spend more time volunteering or doing other things. For my own case, I have my retirement pretty much covered. I mostly just work to fund day to day life and continue to contribute to retirement funds. If it turns out I've only got 2 or 3 years (or less!) left to live, I would definitely stop working entirely and spend my time doing other things.

I'd be more interested in my doctor having this information. I tend to self diagnose (poorly) when presented with too much information that I don't understand well. But I feel like a medical professional could use the data to keep an eye out for specific symptoms and tailor questions for my risks, without giving me unneeded anxiety.

I have heard that giving your doctor information about genetic conditions may result in treatment for those conditions being excluded by your health insurance (because they're "pre-existing").

If you are in the U.S., you may want to investigate the Genetic Information Nondescrimination Act (GINA):

http://www.hhs.gov/ocr/privacy/hipaa/understanding/special/g...

"GINA protects individuals against discrimination based on their genetic information in health coverage and in employment. GINA is divided into two sections, or Titles. Title I of GINA prohibits discrimination based on genetic information in health coverage. Title II of GINA prohibits discrimination based on genetic information in employment."

There's an interesting Freakonomics episode about testing for Huntington's disease. Turns out some people want to know and some people don't. Me, I'd absolutely want to know. If I had a good chance to get it then I'd adjust my life to make the most of it before ~55 instead of planning for a long retirement...as one example.

http://freakonomics.com/2013/06/20/do-you-really-want-to-kno...

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