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Give Your Child the Gift of an Alzheimer's Diagnosis

Soulskill posted 1 year,13 days | from the at-least-it's-not-a-cell-phone dept.

Biotech 198

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.'"

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55% (2, Insightful)

nospam007 (722110) | 1 year,13 days | (#45164357)

"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% (4, Interesting)

Anonymous Coward | 1 year,13 days | (#45164447)

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. I've seen what Parkinson's does to people without the luxury of having endless amounts of money to spend on treatments. It turns you into a giant infant.

Re:55% (1)

Anonymous Coward | 1 year,13 days | (#45164587)

The obvious question is "Why would it change the way you live?" Are you suggesting that you are currently not living the life you want to live but you have the ability to?

Re:55% (4, Insightful)

MightyYar (622222) | 1 year,13 days | (#45164673)

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% (0)

lxs (131946) | 1 year,13 days | (#45165069)

And then you were spared the disease. Even a 90% chance of getting it means a one in ten chance of living to a ripe old age.
Healthy.
Destitute.

I wonder if you can get insurance for that.

Re:55% (3, Insightful)

MightyYar (622222) | 1 year,13 days | (#45165459)

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% (0)

Anonymous Coward | 1 year,13 days | (#45165711)

> Even a 90% chance of getting it means a one in ten chance of living to a ripe old age.

No it doesn't. That would only hold true if that specific disease was the only possible way for you to die.

You've badly over-simplified it in an effort to make your point.

You do still have a point, but it's nothing like as strong you make it sound.

Re:55% (1)

CrimsonAvenger (580665) | 1 year,13 days | (#45165617)

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.

SO, you'd basically leave your wife in the lurch?

Hell, if I knew I was going to die soon, I'd start making meth or something, to make sure my wife had a comfortable widowhood (is that a word?)....

Re:55% (3, Insightful)

SJHillman (1966756) | 1 year,13 days | (#45164701)

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% (1)

Rhaban (987410) | 1 year,13 days | (#45164699)

Having a low chance of contracting Parkinson doesn't mean you don't have a high chance of contracting one of the hundreds of debilitating or lethal diseases out there. You could also die before retirement from thousands of other causes.

Why are you still on /. instead of packing that suitcase now?

Re:55% (4, Insightful)

hey! (33014) | 1 year,13 days | (#45164703)

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 [wikisource.org] :

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% (0)

Anonymous Coward | 1 year,13 days | (#45165619)

But there is more than one way to live carpe diem depending on your priorities. There is not a single one thing I must do before I die, although there is a list of things I would like to do. The list can be mostly sorted into and ordered list based on preference and priority too. By choosing to have long term goals, I can try to hit multiple things on that list, even if there is a chance of getting nothing due to an accident. If one knows they have much less time to live, then they would shorten that list and pick one or two things to concentrate on.

I could rush out the door and travel some place right now. What if I wanted to learn a foreign language or two before going, which would be a worthy goal itself? What if I both want to travel and learn a musical instrument, and the latter better fits my budget now? What if I want to concentrate on getting in better physical shape now, because that would have better long term pay off?

Carpe diem doesn't mean zerg-rushing life, but to make sure that you are always moving forward, not stagnating, and as long as you enjoy the journey as much as the destination.

Re:55% (1)

fast turtle (1118037) | 1 year,13 days | (#45165023)

It wouldn't change how I live as I already "Carpe Diem" and live as though each and every day may be my last. Remember - this game called Life always ends in Sudden Death so live accordingly.

Re:55% (1)

dpilot (134227) | 1 year,13 days | (#45165329)

> this game called Life always ends in Sudden Death

No, it doesn't, and that's part of what this topic is all about. Sometimes life ends slowly - tragically slowly, slipping away little at a time, day by day. Sometimes that slipping away is purely mental, leaving a perfectly serviceable body behind, with barely any of You in it.

Maybe if you're single, "Carpe Diem" works just fine, but if you have wife, kids, etc, do you really want to "play yourself penniless" and then saddle them with the cost of caring for your worthless husk, let alone have them watch you go through the process?

My guess is that most of the politicians that preach against doctor-assisted-suicide don't have much experience with this type of ending. I have no close experience myself, but close enough to tell me that it's bad.

I have 2 qualms. First, without proper controls it may be used prematurely or unnecessarily for greed. Second, has the person's mind been destroyed, or simply suppressed? Is there the possibility of a medical breakthrough that could bring a person back, or are they already gone?

Re:55% (1)

CrimsonAvenger (580665) | 1 year,13 days | (#45165673)

My guess is that most of the politicians that preach against doctor-assisted-suicide don't have much experience with this type of ending. I have no close experience myself, but close enough to tell me that it's bad.

I have 2 qualms. First, without proper controls it may be used prematurely or unnecessarily for greed.

And there you touch upon the key element - physician-assisted suicide only works if everyone involved is ethically beyond reproach.

How many people do you, personally, know that would never, under any circumstances, do something unethical? Note that "any circumstances" includes bribes, threats, pussy, whatever convince someone that "just this once it'll be okay"....

Re:55% (2)

gl4ss (559668) | 1 year,13 days | (#45165219)

I hate to break it to you but there's loads of ways to lose the chance to travel other than parkinsons.

if traveling is your dream, travel now a little, so you'll at least know if the food is crap in bingaladangstan when you're bleeding to death after a traffic accident.

and the world is unifying in customs every day. that's not a bad thing but if you want to see crazy shit then today is the day to go.

Re:55% (0)

Anonymous Coward | 1 year,13 days | (#45164585)

I've seen the ads for genetic testing, and they're mostly useless. If all four of your grandparents died of Alzheimer's, chances are that's what you're going to die from. If nobody in you family ever had it, you won't get it. If there's some in your family (say, one or two grandparents) then this test might make sense. Either way, get plenty of sleep. [bbc.co.uk]

Dr Raphaelle Winsky-Sommerer, a lecturer in sleep at Surrey University, said: "It's not surprising, our whole physiology is changing during sleep.

"The novelty is the role of the interstitial space, but I think it's an added piece of the puzzle not the whole mechanism.

"The significance is that, yet again, it shows sleep may contribute to the restoration of brain cell function and may have protective effects."

Many conditions which lead to the loss of brain cells such as Alzheimer's or Parkinson's disease are characterised by the build-up of damaged proteins in the brain.

The researchers suggest that problems with the brain's cleaning mechanism may contribute to such diseases, but caution more research is needed.

Re:55% (0)

Anonymous Coward | 1 year,13 days | (#45164615)

My mother was adopted, and I have no fucking idea what the medical history of her side of the family is. I was waiting for this test to get cheap, and now that it's down to "less than a tank of gas", I'll probably go for it.

Re:55% (2)

MightyYar (622222) | 1 year,13 days | (#45164773)

Don't be so sure that those are really your grandparents. Illegitimacy rates in Western culture run around 1 in 30, and you have two parents. That's a roughly 1/10 chance* that one of your grandparents aren't really a blood relative.

* I could have the math wrong, but it's probably close enough for a Slashdot discussion - your mom has as 1/30 chance of being illegitimate combined with the chance that your dad has a 1/30 chance of being illegitimate combined with your own 1/30 chance of being illegitimate.

Re:55% (0)

Anonymous Coward | 1 year,13 days | (#45165407)

He had both his and his father's genes scanned (different from sequenced) by 23andMe. He already knows whether his father is his biological father.

23andMe is an awesome service. Is full genome SNP scanning limited? Yes. But if somebody told you 10 years that you could do what 23andMe does for $99, it would have been cool. Full genome sequencing won't cost $99 for another 10 years. So get with the program and live in the now.

Re:55% (1)

CrimsonAvenger (580665) | 1 year,13 days | (#45165841)

Don't be so sure that those are really your grandparents. Illegitimacy rates in Western culture run around 1 in 30, and you have two parents. That's a roughly 1/10 chance* that one of your grandparents aren't really a blood relative.

No, all four of your grandparents (parents of your parents) are blood relatives.

Of course, your grandparents may not be who you think they are - just because you call your father's father "grandpa" doesn't make it so....

Put her down in the "denied" column (0)

Anonymous Coward | 1 year,13 days | (#45164691)

For Medicare, or whatever it will be called then, put her down in the not in the public interest in spending money on.

Re:Put her down in the "denied" column (0)

Anonymous Coward | 1 year,13 days | (#45165129)

Uh Oh!

You just pointed out that the typical slashbot's stupid god is in fact stupid. Prepared to be modded down -999999999999999999.

Eggs chocolate and dairy (1)

goombah99 (560566) | 1 year,13 days | (#45164725)

I was rooting around in some old papers my parents had kept and found an allergy report on myself that had been done when I was 4. It said I needed to avoid Eggs, Chocolate, and Dairy. I love all those things and know I'm not allergic to them. I'm so glad my parents ignored the report. If they had deprived me of Diary it's very likely I would not be able to eat dairy now. The point was the report is a probability, like gene markers, It says I probably was allergic to these things within the error margin of the allergy tests (which are huge). Acting on that would have had severe and unnecessary consequences.

Re:55% (4, Interesting)

Sarten-X (1102295) | 1 year,13 days | (#45164743)

It's not about scaring your kid for 65 years. It's about having 65 years of warning. Perhaps just a nudge in the right direction now, like a focus on cognitive endeavors rather than keeping up on the latest Disney drivel, can encourage a life of improvement to the brain. When Alzheimers' does come around, there's ample cognitive ability to spare, so the gradual decline toward incapability might just outlast your kid's life.

Re:55% (1, Insightful)

Anonymous Coward | 1 year,13 days | (#45164931)

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% (2)

n7ytd (230708) | 1 year,13 days | (#45165669)

It's not about scaring your kid for 65 years. It's about having 65 years of warning. Perhaps just a nudge in the right direction now, like a focus on cognitive endeavors rather than keeping up on the latest Disney drivel, can encourage a life of improvement to the brain. When Alzheimers' does come around, there's ample cognitive ability to spare, so the gradual decline toward incapability might just outlast your kid's life.

Well, shoot, if that's all we're waiting for, let me do everyone's kids a favor:

Hey parents! At some point in the future, all your children are going to die! It will come sooner for some than others, so please teach them to not waste their lives on pointless drivel!

How's that?

Re:55% (1)

bitt3n (941736) | 1 year,13 days | (#45165805)

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

If she's that much at risk for Alzheimer's, you're probably only scaring her for about 15 minutes.

Re:55% (1)

rikkards (98006) | 1 year,13 days | (#45165847)

This is true for pretty much all medical screening.

IT IS NOT THE FUNNY !! (-1)

Anonymous Coward | 1 year,13 days | (#45164377)

Tusk !!

and under the GOP system a pre existing condition (-1, Troll)

Joe_Dragon (2206452) | 1 year,13 days | (#45164399)

that can get them on to the black list

Ugh, the title (1)

i kan reed (749298) | 1 year,13 days | (#45164449)

Much as I dislike both, the "GOP system" is different from the status quo.

Re:Ugh, the title (1)

nitehawk214 (222219) | 1 year,13 days | (#45164805)

Yeah, it's worse.

Re:Ugh, the title (2)

i kan reed (749298) | 1 year,13 days | (#45164869)

If we're using the hypothetical straw-republicans that live in my head: their plan is to keep an emergency supply of healthy poor minorities to vivisect for organs in case a rich person gets sick.

If we're using the the real world: Obamacare is essentially a republican plan except Obamacare adds subsidies so that the working poor who have to buy insurance can afford it.

cure worse than the disease (1)

stenvar (2789879) | 1 year,13 days | (#45164667)

First of all, it's not clear that this is a problem that needs addressing. In a free market, parents would buy child health insurance prior to getting a child that would cover such risks. In fact, in some countries that's how it works: your kids are automatically on the parents' policy, and they have the option of continuing coverage. All you really need for that to work is to legally prevent insurance companies from weaseling out of their obligations once they get more information than when they had when they wrote the original insurance contract.

But if this really were a problem, it still shouldn't be addressed by making insurance blind to all pre-existing conditions. Once you know that a person is likely to develop a disease, "covering" them by insurance at average rates isn't insurance anymore, it's welfare; you simply change the pool of people you tax in order to pay for it. The problem with paying for this kind of welfare out of risk-blind insurance payments is that you end up making insurance blind to preventable pre-existing conditions as well, removing a strong incentive for people to stay healthy.

Re:cure worse than the disease (2)

amorsen (7485) | 1 year,13 days | (#45164741)

The problem with paying for this kind of welfare out of risk-blind insurance payments is that you end up making insurance blind to preventable pre-existing conditions as well, removing a strong incentive for people to stay healthy.

Does that mean we should replace the current warning labels on cigarettes with this?

"Smoking Causes Health Insurance Premiums to Rise"

Re:cure worse than the disease (2)

SecurityTheatre (2427858) | 1 year,13 days | (#45164979)

While the issue of people staying healthy is an important one (and should not be ignored), Alzheimers is a great example of a non-preventable condition.

So the ACTUAL conundrum here is this:

1) Do alzheimers/cancer sufferers (including/especially the poor and uninsured) deserve treatment? Is it a human rights issue? Or even one of ethics?

2) If so, who pays for it?

This is the issue. You either decide that some people won't be covered and will simply starve to death on the sidewalk, or you cover them, which implies some level of social welfare payment.

Now, if you don't like some fraction of people dying on the sidewalk, the question is simply to decide how to pay for the service.

Right now, in the US, the rule is simply that a hospital cannot turn away someone who is within 24 hours of death. So minor and preventable conditions like a skin tumor, or pre-diabetes go untreated and result in a dozen or two dozen ER visits shortly before the person dies.

This costs the hospitals an ENORMOUS amount (some hospitals, it accounts for almost 50% of budgets), which is paid by insurance (mostly) and is reflected in premiums, albiet in a highly inefficient way that also has terrible health outcomes and is strongly weighted to hurt hospitals in less affluent areas.

Also, once you have a few minor issues, like skin tumors that are removed, you will have a VERY hard time getting insurance, because you're a cancer risk, even if you ARE a highly productive member of society or a small business owner.

A middle-ground might be to mandate insurance companies to not turn away people for pre-existing conditions and to provide a basic safety net for elderly and poor (this is what the US currently does with "Obamacare"). I don't think it goes far enough to promote preventative health measures (which decrease long-term costs).

Meh... problems problems.

Re:cure worse than the disease (2)

Opportunist (166417) | 1 year,13 days | (#45165449)

Preventative measures (or the lack thereof) are also a problem around here in Europe, in our "socialized healthcare paradise". After literally decades our insurances finally caught on that it's cheaper to pay people to get checked for diseases early so if people are on the road to an early grave they can now easily and more importantly cheaply be kept alive instead of having to resort to expensive measures later on (like, say, pay for comparably cheap blood pressure medicine now than having to pay for insanely expensive bypass operations later).

If they could now find out that it's cheaper to find tumors early and have them removed rather than keeping the patient alive that year or two he still lives after it's discovered and determined to be terminal...

Re:cure worse than the disease (0)

Anonymous Coward | 1 year,13 days | (#45165173)

In a free market, many parents have to make the decision between paying the health insurance premium or buying food.

Before the inevitable strawmen are brought out, I'll add this:

In a free market, many hard working, full time employed parents who do not buy unnecessary luxuries or live drug/alcohol-fueled or lavish lifestyles have to make a choice between paying the health insurance premium or buying food.

Re:cure worse than the disease (1)

Opportunist (166417) | 1 year,13 days | (#45165513)

The problem is that in a free market people sell their work force cheaper than they actually can if they want to participate in what should be the minimum living standard of a western world.

When people need X money to live today, to pay their rent, their food, their power and to make other ends meet, you will find people willing to work for X. That also means that this is what will be paid. But that in turn means that these people will have no money to put aside for unexpected events, for retirement, for healthcare, for insurances.

And this is why people who neither have highly sought after skills nor the necessary connections to have a good job despite being complete idiots will NEVER be able to afford such "luxuries" as healthcare or retirement plans. There is always someone else who is willing to work for just enough money to make ends meet today.

Some Perspective (2)

g0bshiTe (596213) | 1 year,13 days | (#45164415)

Seriously some perspective here. As a parent why in hell am I going to worry about my kids health when she's in her 60's? No doubt I'll be dead and gone then. When my kid was 5 I never worried what their life would be like when they were in their golden years, hell that was 55 years away from then.

I suggest to prevent your child getting Alzheimers you spend less time worrying about their state of mind when they reach old age and more time worrying about their long journey there.

It would suck to take precautions to prevent them from having that later in life, and have the kid snuff it before even getting there.

Re:Some Perspective (5, Insightful)

OhHellWithIt (756826) | 1 year,13 days | (#45164521)

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.

Re:Some Perspective (1)

CrimsonAvenger (580665) | 1 year,13 days | (#45165763)

Agree one hundred percent!

Re:Some Perspective (1)

Opportunist (166417) | 1 year,13 days | (#45165529)

Welcome to the time when parents live their kids' life for them.

It's not like it's anything new, never heard of parents that spend more time planning their kids' future (and of course even present), to make sure "they got it better" (for varying definitions of "better")?

Speaking as a parent (3, Funny)

93 Escort Wagon (326346) | 1 year,13 days | (#45164423)

'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.'

Yeah, that's much more comforting. Thanks, Professor!

Re:Speaking as a parent (0)

Anonymous Coward | 1 year,13 days | (#45164811)

I'm more worried about when I have to explain to my children what "Twerking" means.

Re:Speaking as a parent (1)

Opportunist (166417) | 1 year,13 days | (#45165547)

I'm not. I don't have the foggiest clue what it means and somehow I don't think knowing it would enrich my life...

Re:Speaking as a parent (1)

Anonymous Coward | 1 year,13 days | (#45165757)

No time to worry about 5-year old getting Alzheimer when old.
There's too much going on now have to deal with, such-as:
What did you do with the cat?
Stop feeding my shoes to the dog!
Windows don't make a good backboard for basket ball shots.
What's that smell?
Why is smoke still comming from under the bed?
Stuffing up the drains to let water spill on the floor isn't how we make water slides.
Why did I find the hamster in the fridge again?
O'h shit, how will I explain to your teacher why all of your skin is painted green today?
Fuck Alzheimers ! Lucky to make it through each day!

Re:Speaking as a parent (4, Funny)

bitt3n (941736) | 1 year,13 days | (#45165789)

'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.'

Yeah, that's much more comforting. Thanks, Professor!

well on the plus side, driving around in a car with drunk boys is clinically proven to reduce one's risk of acquiring Alzheimer's.

GATTACA (-1)

Anonymous Coward | 1 year,13 days | (#45164437)

Why does this sound like GATTACA?

Re:GATTACA (1)

StoneCrusher (717949) | 1 year,13 days | (#45164551)

Why does this sound like GATTACA?

Because it is very much like GATTACA. https://www.youtube.com/watch?v=kl68ca3Yzpo [youtube.com]

NERVE CONDITION - PROBABILITY 60%
MANIC DEPRESSION - 42%
OBESITY - 66%
ATTENTION DEFICIT DISORDER - 89%
HEART DISORDER - 99%
"EARLY FATAL POTENTIAL."
LIFE EXPECTANCY - 33 YEARS.

Re:GATTACA (1)

Opportunist (166417) | 1 year,13 days | (#45165569)

Just you wait 'til we can predict with some certainty how long someone lives and you'll instantly get someone who decides that it's a waste of resources to educate someone 'cause he will be dead before his working could recover the cost.

If there are things you can do now... (4, Insightful)

barlevg (2111272) | 1 year,13 days | (#45164453)

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... (3, Insightful)

Anonymous Coward | 1 year,13 days | (#45164567)

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.

Re:If there are things you can do now... (2)

stenvar (2789879) | 1 year,13 days | (#45164775)

Generally, the more mentally fit and alert she starts out, the longer she'll stay healthy and functional. Exercise and a good diet may also help. Of course, those are generally good things to do, but for some people they have much less importance than for others. If she knows she is predisposed for Alzheimer's, she knows that these choices are likely to be much more important for her than for average people.

Alternatively, she can also simply decide not to bother and instead to live life faster and more intensively; maximizing lifespan isn't everything, in particular since years after 60 are arguably less valuable than years before 60, but you need to make sacrifices in your earlier years to prepare for the later years.

What exercise and what's a good diet, anyway? (1)

swb (14022) | 1 year,13 days | (#45164997)

A lot of evidence suggest that Alzheimer's is "type 3 diabetes", so does that mean that a "good diet" is what we've been told is a good diet since the late 1960s (high carbohydrate, low fat), or is a "good diet" what is suggested by low-carbohydrate advocates suggest, one high in fat and very low in carbohydrates (a ketogenic diet)?

And what kind of exercise? From what I've read, there's not a lot to suggest that exercise has much influence on weight loss, so perhaps just "being active" (walking 2-3 miles per day) is good enough versus engaging in running or other vigorous cardio? And then there are those who suggest that weight training is better.

My sense is we really don't know the answers to these questions very well and there may be huge variations in response on an individual basis, suggesting a strong genetic influence.

Re:If there are things you can do now... (0)

Anonymous Coward | 1 year,13 days | (#45165293)

I think her parents should focus on training her to be a nice person.

Then hopefully if her brain starts malfunctioning she'd still be nicer than average.

More people living longer in great health is good but overrated. More nice people around is a superior goal but nowadays seems to be too low a priority.

Re:If there are things you can do now... (1)

lxs (131946) | 1 year,13 days | (#45164835)

What if the test reported nothing wrong and the kid turned into a fat lazy slob because they didn't have a special incentive to lead a healthy lifestyle?

Re:If there are things you can do now... (2)

disposable60 (735022) | 1 year,13 days | (#45165795)

I'm part of a longitudinal study on early-onset alz (I'm 53). I doubt the study would want to look at anyone much younger, but it's being run out of Indiana University Hospital Neurology in Indianapolis, if anyone cares to inquire.

Fundamental Question (2)

SecurityTheatre (2427858) | 1 year,13 days | (#45164461)

This is one of the fundamental questions of genetic screening.

So what if you find out you have some future likelihood of ending up with a serious illness that you cannot prevent?

I don't think I would want to know.

Re:Fundamental Question (2)

DRMShill (1157993) | 1 year,13 days | (#45165591)

I don't understand the logic of people like you. What if you find out you have a serious that you can treat? Suppose you have an incurable illness but it won't hit for 60 years? 60 years is a long time in medical research. Suppose it' incurable but you can live your life in such a way as to reduce the chances of it?

Do you also drive to work with a blind fold on because other drivers make you nervous?

Re:Fundamental Question (1)

SecurityTheatre (2427858) | 1 year,13 days | (#45165633)

Do you also drive to work with a blind fold on because other drivers make you nervous?

That's a pretty silly analogy.

I choose to drive every day DESPITE it being fundamentally the riskiest thing I do in my life, because it does not benefit me to sit at home and worry about my potential fate.

Re:Fundamental Question (1)

Opportunist (166417) | 1 year,13 days | (#45165625)

I don't think it helps in any way to know.

Imagine you find out today that you have some sort of disease, that you cannot do anything about it and that it will eventually kill you in, say, 30 or 40 years. Hell, even if I knew it wouldn't change a thing. I can't do jack about it, so why bother thinking about it? I will of course keep up to date with developments in the area and certainly any kind of breakthrough in the field will have my undivided attention, but aside of that, what's there that I could possibly do?

Re:Fundamental Question (0)

Anonymous Coward | 1 year,13 days | (#45165755)

Well, there's an 85% that Wojcicki's husband will get his nose broken when someone smacks him in the face for wearing those stupid google glasses.

He's has inherited both the douche baggery gene and the asshole gene. Bad combination.

Re:Fundamental Question (0)

Anonymous Coward | 1 year,13 days | (#45165765)

It is more complicated than that. Suppose you've been diagnosed and treated for a serious ailment that has a strong genetic component in a population to which you happen to belong. Two direct blood relatives have died from the same disease, and one was 1st diagnosed at an unusually early age. You have children and you are extradorinarily worried that they may have inherited the genetic component from you. Further, there is a high probability of reoccurance if you have the gene. Testing enables you to determine if you need further monitoring or treatment, and if your children need to be alert to changes in their health.

For many "incurable" diseases, the treatment options and outcomes are much better with early detection. Trends in medical care are against screening without other compelling reasons, and those reasons are being narrowed. That will only get worse (with and without Obamacare for US-domiciled readers). In the cases where there are no treatments, it still allows planning. Just purchase the long term care insurance policy BEFORE you are tested.

Persons with no obvious family histories of illness with genetic links may be wasting their money. If you have family history, genetic screening with knowledgable counseling (don't try doing this at home with only the internet for advice and counsel) may be life-saving.

Re:Fundamental Question (1)

n7ytd (230708) | 1 year,13 days | (#45165815)

This is one of the fundamental questions of genetic screening.

So what if you find out you have some future likelihood of ending up with a serious illness that you cannot prevent?

I don't think I would want to know.

You do already do have a likelihood of ending up with a serious illness that you cannot prevent. You will most likely die of a terminal illness late in life, unless you are unlucky enough to suffer a fatal accident before you contract whatever disease is waiting for you. But, I do agree with you, I don't think I would want to know because I would not want that knowledge gnawing in the back of my mind for the rest of my life, and it would probably affect my choices in unwise ways. I'm approaching age 40 now, and planning for retirement is very much on my mind. If I knew that I was likely to die at age 50-55, would I start eating large slabs of red meat and taking extravagant vacations rather than save for retirement? What if I got lucky and didn't get the disease, or a cure was discovered in the meantime? Then I'm 55, obese, and broke. Geez, all my replies in this thread are so fatalistic today...

Well, that seals her fate, I guess. (3, Insightful)

jeffb (2.718) (1189693) | 1 year,13 days | (#45164483)

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. (1)

schneidafunk (795759) | 1 year,13 days | (#45164533)

My thoughts exactly. This Alzheimer breakthrough [caribbean360.com] I read about yesterday.

Re:Well, that seals her fate, I guess. (0, Funny)

Anonymous Coward | 1 year,13 days | (#45164865)

No dad. That was 20 years ago...

Re:Well, that seals her fate, I guess. (3, Insightful)

TheCarp (96830) | 1 year,13 days | (#45164679)

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/ [harvard.edu]

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.

Really? With your UID I'd expect a little better (0)

Anonymous Coward | 1 year,13 days | (#45165343)

Apparently you haven't lived with a spouse ( or in my case a parent) with Alzheimer's.

The worst is when in their all too brief moments of clarity they know what is happening and are helpless to do anything about it before the light goes back out of their eyes and they curse you as a stranger for stealing something from them prior to your birth.

I would not wish that on my worst enemy.

Re:Really? With your UID I'd expect a little bette (1)

jeffb (2.718) (1189693) | 1 year,13 days | (#45165721)

My UID? Did... did you just fall for what amounts to an injection attack?

I appreciate the horror of Alzheimer's as much as anyone who has higher-than-normal empathy, a good imagination, and no direct experience. So, no, I probably don't get it as viscerally as you do. But sixty years is a very long time. If I thought it likely I had sixty more years, and if the post below yours had not been made AC, I'd definitely take that bet on a cure -- or, more accurately, effective treatment and prevention of the syndrome's ill effects.

Re:Well, that seals her fate, I guess. (0)

Anonymous Coward | 1 year,13 days | (#45165457)

There will not be a cure for Alzheimer's in the next sixty years. That is a guarantee you can take to the bank.

What can you do now. (0)

Sterling_Aug (724437) | 1 year,13 days | (#45164489)

Teach your child to focus on their own health. There are studies that prove spices such as turmeric contain chemicals that help brain activity and reduce the chances of getting Alzheimer's.

Re:What can you do now. (0)

smooth wombat (796938) | 1 year,13 days | (#45164777)

There are studies that prove spices such as turmeric. . .

You mean (A HREF="http://www.ncbi.nlm.nih.gov/pubmed/23723666">one study [nih.gov] which had 3 patients who were given turmeric capsules. This one study didn't prove anything. It only suggested there is some kind of link between properties in turmeric and the somewhat mitigated effects of Alzheimer's.

Further, it's not tumeric per se but curcumin, the source of turmeric, which seems to have the effect.

Teach your child to focus on their own health.

If I had children, I would but the government has said my health doesn't matter. What matters is your neighbors health which is why I'm forced to hand over my money to smokers, the obese, alcoholics and drug users who never have to change their ways.

whole genome sequencing... (1)

Anonymous Coward | 1 year,13 days | (#45164579)

Hi,

I'm off to the ASHG meeting next week (human genetics) and will see how much advance there has been in sequencing and diagnosis.

Here is the real issue. There are molecular tags for definite diseases. There are copies of genes that increase your chances. But you must know the relative risk.

Whole genome sequencing is going to arrive, simply because it will be too cheap to avoid, and there will be an avalanche of information.

The more whole genomes we get, the BETTER we will get at predicting the outcomes and mechanisms of subtle outcomes.

The Gods help those who help themselves. (0)

Anonymous Coward | 1 year,13 days | (#45164601)

Give the child a basic book on medicine, and if she shows interest give her more. She will be more driven than anyone else on this earth to find a cure. If she succeeds then something good came from this. If she fails then at least she went down fighting.

This way she'll know.... (-1)

Anonymous Coward | 1 year,13 days | (#45164625)

To donate money/time/brainpower to Alzheimer's research instead of wasting it on breast cancer awareness.

Seems like a win. What kind of idiot would say to burn the report?

Retirement / estate planning (1)

xtal (49134) | 1 year,13 days | (#45164657)

If I had such a diagnosis I would likely dramatically alter my estate planning strategies. I can see several scenarios where that information would be very useful.

The 23andme kit is on my list of things to purchase. I do wish it could test for more things, but I suppose that's in the works.

Don't test kids. (1)

Hatta (162192) | 1 year,13 days | (#45164697)

Test yourself, and test fetuses. Procreation without genetic testing in this day and age is terribly irresponsible. But if you're going to help tidy up the gene pool, you have to do the testing before you procreate.

Re:Don't test kids. (2)

fropenn (1116699) | 1 year,13 days | (#45164923)

I think you misunderstand the accuracy of modern genetic testing. In most cases "markers" are identified that are associated with an increased risk of a condition or disorder. Increased risk != a guarantee that the person will develop the disorder or condition. Further, many (myself included) would consider screening for disorders or conditions (like alzheimer's) for which there is no cure and no benefit to early intervention in children unethical. (Once you become an adult, you are free to make your own choices.) Who is to say that living a life with an increased risk of _____ (alzheimer's, breast cancer, skin cancer, etc.) is not a life worth living?

Re:Don't test kids. (0)

Anonymous Coward | 1 year,13 days | (#45164981)

Better yet, do like the wife and I have done. Skip procreation.

Re:Don't test kids. (0)

Anonymous Coward | 1 year,13 days | (#45165451)

If you have a genetic risk factor for a future disorder, would you prefer to have been aborted? Or would you rather take your chances?

Re:Don't test kids. (1)

Hatta (162192) | 1 year,13 days | (#45165639)

If I was aborted, I'd never experience the loss. Death is scary. But if there was never any me to experience anything, there would be no fear.

Besides, if I was aborted in favor of a healthy fetus, that person would be in favor of aborting fetuses with genetic defects, for the exact reason you think I should be against it.

This line of reasoning is nonsensical. Out of the millions of sperm in an ejaculate, only one gets to fertilize an egg. The flap of a butterfly's wing could change which sperm fertilizes the egg, and could have prevented my existence. Should I be against butterflies now?

"There's no gene for fate." (2)

idontgno (624372) | 1 year,13 days | (#45164795)

-- Vincent, Gattaca

Driving? (1)

zerosomething (1353609) | 1 year,13 days | (#45164889)

By the time this kid is 16 she will likely have access to a self driving car. Hell it may even be required for 16 to 21 year olds by then.

Hold on there, buckoo (4, Funny)

Overzeetop (214511) | 1 year,13 days | (#45165163)

Now she's in a self driving car with drunk boys, and nobody has to keep there hands on the wheel?

Out of the frying pan and into the fire, I say.

Prostate screening discussion yesterday with doc (3, Interesting)

the_rajah (749499) | 1 year,13 days | (#45164899)

I had my annual physical with my family doctor yesterday. He told me that he no longer does, nor does he recommend, prostate cancer screening based on recent studies. Most of the prostate cancers detected are not the ones that will kill you, but it's not possible to test for that without an invasive biopsy that is very uncomfortable. If you jump right into treating the cancer, that is also very uncomfortable and potentially debilitating.

Re:Prostate screening discussion yesterday with do (1)

Anonymous Coward | 1 year,13 days | (#45165555)

I had my annual physical with my family doctor yesterday. He told me that he no longer does, nor does he recommend, prostate cancer screening based on recent studies. Most of the prostate cancers detected are not the ones that will kill you, but it's not possible to test for that without an invasive biopsy that is very uncomfortable. If you jump right into treating the cancer, that is also very uncomfortable and potentially debilitating.

Yeah. You know what is more debilitating? Having a chance to cure your cancer but sticking with "oh well, I'm old and I will live another 5 or 10 years with it before it will kill me so not going to get it cured." Then 7 years pass and you die of curable disease.

1. your doctor is an idiot
2. the "finger test" works
3. biopsy uncomfortable? How about every day of the last 3 or 5 years of your life as you can't piss or walk properly?
4. for PSA test to have any meaning, you need a baseline for results in years prior to middle age (or at least to old age) - then and only then can it show any results. Even if you opt out of this one because it is not conclusive, the "finger test" *is* physical exam of the prostate!

http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/mortality/uk-prostate-cancer-mortality-statistics [cancerresearchuk.org]

Prostate cancer is 2nd most common cause of cancer deaths, and thus most common cause of cancer deaths in male non-smokers. I guess no treatment warranted??

PS. The only time I would opt-out of treatment of prostate cancer is if I had other terminal diseases that would kill be sooner *and/or* I would not be capable of making my own decisions anymore. That's it.

Re:Prostate screening discussion yesterday with do (1)

dj245 (732906) | 1 year,13 days | (#45165703)

I had my annual physical with my family doctor yesterday. He told me that he no longer does, nor does he recommend, prostate cancer screening based on recent studies. Most of the prostate cancers detected are not the ones that will kill you, but it's not possible to test for that without an invasive biopsy that is very uncomfortable. If you jump right into treating the cancer, that is also very uncomfortable and potentially debilitating.

Caution definitely needs to be taken in treatment of this kind of cancer.

But why not test for it? Wouldn't it be a good idea to monitor the size/shape of anything which was found?

Slashvertisement (5, Insightful)

argStyopa (232550) | 1 year,13 days | (#45164927)

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.

Re:Slashvertisement (3, Informative)

Anonymous Coward | 1 year,13 days | (#45165413)

> drop $100 to see if there's any likelihood that your kid will eventually contract Alzheimers

100$ is for the whole range of genetic tests, not just Alzheimers. Just saying.

Plan ahead .. its a hell of a lot cheaper (1)

Anonymous Coward | 1 year,13 days | (#45165037)

Buy the kid a long term care policy with $75 per day benefit and 5% inflation rider .. and most importantly look for a 10 year fixed premium. At age 5,
the amount of interest compound with have the policy worth something north of $500 per day by the time it is needed, if ever. On the flip side, if you do it now you will pay a hell of a lot less than if she is 40, 50, 60 etc

How does this change anything? (5, Insightful)

harvestsun (2948641) | 1 year,13 days | (#45165049)

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.

many genes dont express themselves (2)

peter303 (12292) | 1 year,13 days | (#45165353)

And people still dont know yet why. The third person to be sequenced Jame Wtson had like 30 serious defects in the genetic disease databse like bindness for example, but these had not manifested themselves.

Fund research (1)

Stewie241 (1035724) | 1 year,13 days | (#45165525)

If there was much degree of accuracy, it may end up working the way open source does - developers scratch their own itches. Some people may be more likely to fund alzheimer's research if they knew their son or daughter was likely to get it. Or they themselves were.

The negative effect of this might be that harder to predict and/or less common diseases would get less funding.

I had the test done (1)

badford (874035) | 1 year,13 days | (#45165709)

Forgot what it said, though. Now, where is that damn paper? Have you seen the remote? I put it right here! What were we talking about?

so what's the counter-argument? (1)

badford (874035) | 1 year,13 days | (#45165739)

My child does not have any genetic bias towards degenerative brain disease after age 65. I guess I should feed her a diet of froot loops & iCarly

What Our Doctor Told Us (0)

Anonymous Coward | 1 year,13 days | (#45165779)

When our son was diagnosed with a certain non-curable medical disorder, it came with a 60% chance that he would develop another, non-curable, non-preventable medical disorder as well.
When we asked our doctor about it, he said, "That's not really relevant to your situation."
And when we asked why, he said, "Because those statistics only apply to the population at large. Your son either will develop the disorder, or he won't. It's 100%, or 0%, and there's nothing we can do to plan or decide which percentage he will be in."

It made things a lot easier to deal with, honestly. And our son was in that 100%, as well as being in the general population's 60%, and he did develop the disorder. But with all of his other complications, we always keep that one phrase in mind; it doesn't matter what the chances are to everyone else, when it comes to you it either happens or it doesn't. I hope that this will be as comforting for you as it was for us.

boys? (0)

Anonymous Coward | 1 year,13 days | (#45165831)

but driving around with drunk girls is ok

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