Give Your Child the Gift of an Alzheimer's Diagnosis

theodp writes "'There's a lot you can do for your child with 99 dollars,' explains Fast Company's Elizabeth Murphy, who opted to get her adopted 5-year-old daughter's genes tested by 23andMe, a startup founded by Anne Wojcicki that's been funded to the tune of $126 million by Google, Sergey Brin (Wojcicki's now-separated spouse), Yuri Milner, and others. So, how'd that work out? 'My daughter,' writes Murphy, 'who is learning to read and tie her shoes, has two copies of the APOE-4 variant, the strongest genetic risk factor for Alzheimer's. According to her 23andMe results, she has a 55% chance of contracting the disease between the ages of 65 and 79.' So, what is 23andMe's advice for the worried Mom? 'You have this potential now to engage her in all kinds of activities,' said Wojcicki. 'Do you get her focused on her exercise and what she's eating, and doing brain games and more math?' Duke associate professor of public policy Don Taylor had more comforting advice for Murphy. 'It's possible the best thing you can do is burn that damn report and never think of it again,' he said. 'I'm just talking now as a parent. Do not wreck yourself about your 5-year-old getting Alzheimer's. Worry more about the fact that when she's a teenager she might be driving around in cars with drunk boys.'"

Comments

55%

[nospam007]

"she has a 55% chance of contracting the disease between the ages of 65 and 79."

You can avoid that fate, just let here walk on a hill during a thunderstorm with an umbrella.

It's stupid to scare your kid for 65 years.

Re:55%

[MightyYar]

You wouldn't change the way you live if you knew your expiration date? I certainly would. My wife and I try to save as much as we can because we have to assume that we will live to 80 or 90. If I took a blood test that said I was dead by 55, that's hundreds of thousands of dollars that I'd spend doing something else.

Re:55%

[SJHillman]

I would like to go to Europe some day. Sure, I have the means to do it right now but that doesn't mean it's a good idea because it would seriously set back other goals I have. By putting off a trip to Europe for now, I can achieve all of my goals eventually. However, if I had a condition that would make long-term goals impossible, then sure, I would go to Europe now because I would no longer be sacrificing the now-impossible goals.

Re:55%

[hey!]

If it's important for you to travel the world before you die, then do it right away even if you *don't* have the markers for some degenerative genetic disease. See to your priorities as soon as is humanly possible, at least until they develop a test that tells whether you'll be hit by a bus on your 50th birthday.

The advice "carpe diem" ("seize the day") is as good now as it was 2000 years ago when Horace wrote those words:

You should not ask it, it is wrong to know impious things, what end the
gods will have given to me, to you, O Leuconoe, and do not try
Babylonian calculations [i.e., astrology]. How much better it is to endure whatever will be,
whether Jupiter has allotted to you more winters or [whether this one is] the last,
which now weakens upon the opposed rocks of the Tyrrhenian
Sea: may you be wise, strain your wines [i.e., prepare it for immediate drinking], and because of short life
prune long anticipation. While we are speaking, envious life
will have fled:seize the day, trusting the future as little as possible.

Re:55%

[Anonymous Coward]

So if your child doesn't have a chance of getting Alzheimer's you would not nudge the to focus on cognitive endeavors instead of Disney drivel?

Re:55%

[MightyYar]

It still lets me plan my life. More data is good, and you generally play the odds. I'm not planning to live to 100, even though I might.

Anyway, the choices aren't "destitute" and "well-off"... that's a false dichotomy. There is an infinite gradation between the two, and I'm talking about picking something along that continuum. At least some of my retirement will include an annuity as a safety net, no matter when I'm supposed to die. If they invent a potion that gets me to 130, I'll still have my annuity.

Re:55%

[citizenr]

My father has Parkinson's and particpated in the 23andMe study. He has one of the two markers that 23andMe knows about. I happen to have none.

If I knew that I have a high chance of contracting Parkinson's it would change the way I live my life immediately. Instead of waiting until near retirement to travel the world, I'd live out of a suitcase and do it now.

You are delusional, you are lying to yourself.
You wouldnt change duck, you would find a way to rationalize just like you did now.

If there are things you can do now...

[barlevg]

Let's say the genetic test instead reported that the kid was at high risk of skin cancer. No one would argue that that's not useful information--give greater emphasis to teaching the kid to use sunscreen and avoid tanning salons. I'm not up on what the current research says are ways of delaying / combating the onset of Alzheimer's, but if such methods exist and can be started early, why wouldn't you make use of the information. Yes, there are a lot of other ways to be killed or debilitated in sixty years of life, and in sixty years, we may well have a cure, but more information is never (okay fine, rarely?) a bad thing.

Another good use of the information in this report: enroll the kid in some longitudinal studies on the progression of Alzheimer's, if such things exist and look for children that young.

Re:If there are things you can do now...

[Anonymous Coward]

More information is very often a bad thing:

1. Incorrect information can lead you to make exactly the opposite choices to the ones you would have made with correct information, or with no information
2. Incomplete information can lead you to make incorrect assumptions which you wouldn't make if you had no information
3. Information on probabilities is not easy to correctly interpret even for a professional statistician
4. Ignorance is bliss - knowing you are doomed is not likely to lead to greater emotional health over a lifetime

23andme can't give me correct & complete information about my health outcomes 30 years from now. All it can give me is incorrect/incomplete probabilistic information, and all I can do with that is worry about it. There are very sound reasons to think such information is worse than useless.

Well, that seals her fate, I guess.

[jeffb (2.718)]

Because there's clearly no chance of significant progress on Alzheimer's treatment, prevention, or reversal over the next SIXTY YEARS.

If I'd received a diagnosis like that in my teens, it might well have lent me some much-needed career focus. As it is, I sort of happened into a position where I was contributing to Alzheimer's research (in a very small way), and eventually drifted back out of it. With this kind of motivation, I might have pushed a lot harder, and stayed engaged.

Seriously, if I had to pick a terrible disease to contract sixty years down the road, Alzheimer's would be high on my list. It's high-profile, there's a huge amount of research being done, and there are lots of promising avenues for progress.

Re:Well, that seals her fate, I guess.

[TheCarp]

Not only that but there is a bit of a "its how you look at it". A lot of evidence on the disease indicates that there are likely several factors involved and that the damage starts decades before symptoms. That means that.... sometime in her 30s or 40s is really when she needs the breakthrough by....but
it also means that she can be mindful of it.

Take this: http://news.harvard.edu/gazette/story/2013/03/use-it-or-lose-it/

Evidence that using the mind, and and being stimulated by different environments (something that we naturally tend to do less of as we age and get into lifelong habbits) helps:

The ability of an enriched, novel environment to prevent amyloid beta protein from affecting the signaling strength and communication between nerve cells was seen in both young and middle-aged wild-type mice.

Seems like evidence to me that being mindful of propensity for the disease early does, right now, give some possibilities for mitigating the worst of it down the road. Maybe not now as she is 5 years old, but later in her 30s and 40s.

Kinda makes me think I should switch up hobbies or....drop acid again.

Re:Some Perspective

[OhHellWithIt]

The gift to my kid would be for me to get the test, never tell a soul about it, and make plans to deal with Alzheimer's if I'm going to get it.

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[argStyopa]

I agree with latter-quoted guy: there's a HUGE business out of exploiting the (natural) fears of new parents. I have 4 kids, and our level of paranoia on the first one was crazy.

The idea that you need to drop $100 to see if there's any likelihood that your kid will eventually contract Alzheimers is ludicrous.
- there's no certainty about these numbers, it's about as reliable as the weather
- even if they WERE reliable, there's no firm understanding of genetic vs environmental factors
- and even if there was a firm understanding, there are no developed therapies/routines that are known to have ANY impact on long term development of the condition.

This is just marketing FUD to paranoid parents. BELIEVE ME, you're going to have about a million other far more immediate concerns getting your kids to the point where they move out on their own, and thereafter.

Personally, I'd be flipping delighted if someone could guarantee to me that my kids will live long enough for Alzheimers to be of the faintest relevance. Seriously.

How does this change anything?

[harvestsun]

Do you really need to know your child is at risk of Alzheimer's before you decide to teach them healthy habits and encourage brain activity?
Then newsflash: you may be a really shitty parent.