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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.'"
"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.
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.
I am Bennett Haselton! I am Bennett Haselton!
'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!
#DeleteChrome
Much as I dislike both, the "GOP system" is different from the status quo.
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.
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.
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.
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.
Why does this sound like GATTACA?
Because it is very much like GATTACA. https://www.youtube.com/watch?v=kl68ca3Yzpo
NERVE CONDITION - PROBABILITY 60%
MANIC DEPRESSION - 42%
OBESITY - 66%
ATTENTION DEFICIT DISORDER - 89%
HEART DISORDER - 99%
"EARLY FATAL POTENTIAL."
LIFE EXPECTANCY - 33 YEARS.
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.
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.
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 panic
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.
For Medicare, or whatever it will be called then, put her down in the not in the public interest in spending money on.
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.
Give me Classic Slashdot or give me death!
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.
Some drink at the fountain of knowledge. Others just gargle.
-- Vincent, Gattaca
Welcome to the Panopticon. Used to be a prison, now it's your home.
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.
It all starts at 0
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.
"Do the Right Thing. It will gratify some people and astound the rest." - Mark Twain
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.
-Styopa
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.
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
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.
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.
Is it just my observation, or are there way too many stupid people in the world?
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.
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.
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 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
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.
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.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
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?
Even those who arrange and design shrubberies are under considerable economic stress at this period in history.
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?
-badford
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.
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
-badford
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.
but driving around with drunk girls is ok
In 60 years they'll probably have a very expensive medication you can take to moderate the effects of the disease. That's the way it's going it seems in Big Pharma, they won't cure you but they'll milk you for a very expense prescription for the rest of your life.
In the meantime, this parent should be taken out and flogged mercilessly because you've now instilled a fear in your child no matter how you try and mask it. You'll now treat that child differently because you view them differently. This whole 23andme bullshit is another way to separate you from your money for not a lot of benefit. Now ancestry.com is using it so you can find your genetic roots as well. You may as well go to the Mall and get your Biorhythm chart built out for you because you're born with a set of genes and unless there are cures for all these things that are genetically linked, knowing that you'll die at a certain time or have a certain disease has more meaning later on in life and will create unnecessary worry and burden on you and your loved ones. While you're on this planet with it's dysfunctional economies and governments where war is preferrable to peace, enjoy life to its fullest and every day of your life because you could also get run over by a truck walking across the US on an honor walk for your son.
Harrison's Postulate - "For every action there is an equal and opposite criticism"
Education on relative risks is crucial to rational living. What is your daughter most likely to get & WHEN?
When people are in their prime years, the CDC says 120 million US citizens have STDs; 1 out of 3 adults or more. 1 out of 3 will get heart disease, kidney & pancreas/diabetes. All of these can severely degrade ones ability to live & work and kill prematurely.
So what does your daughter really need to focus on to avoid MAJOR problems in her prime productive years.
as a parent, I'm horrified the author whored out her 5 year old for this article. Her article will still be readable on the internet, 15 years from now when her now 5 year old, pre kindergarten kid is a young adult. Her future adult's prospective employers, prospective spouses, etc, will all be able to read her DNA results. If the author wanted to share about herself ... especially as her child isn't genetically hers ... that'd be fine. Imagine her writing about her significant other, without his consent ? 'oh yea, my hubby has a marker for testicular cancer, sucks being him.'
Guess that's the pandoras box that genetic testing opens up, exposing privacy of this kid without their ability to have a clue what they were consenting to.
of genetics research.. it won't be long before MEN are OBSOLETE, and women can be fertilized with artificially created, genetically-superior sperm...
(some might argue that men are already obsolete.....)
While it's nice to have the tech, I have to wonder again about abuses.
It seems (to me) nothing can be celebrated without also considering who will be abusing the system.
The 5 yo doesn't grasp the implications of her DNA being documented (if any) and I doubt the mother could even if you explained it to her, she sees only her daughters health.
That's why marketing people choose to sell things of a dubious nature using "parental concern".
There was an article earlier about people with the tendency to see the negative in any given situation, that's me to the tee.
I have to factor that attitude into all my important decisions.
So am I a genetic worry wart over non-issues or does anyone else feel like "DNA testing" and "obamacare" will some how wind up being abused or as a tool of oppression or segregation?
I'm not saying "don't ever do these things" I just feel beset with the constant feeling that those in power will manipulate and monetize *EVERYTHING*, which leads to the state of "we can't have nice things".
"If any question why we died, Tell them because our fathers lied."
There are two main types of cancers Mammograms detect:
A slow-growing type you'd be able to notice yourself (because of the lump) before it's too late
The fast-growing type where treatment is largely futile, as it starts spreading before it can be caught by a mammogram.
There ARE some cancers detected where mammograms are useful, but the cost of the scans, biopsies, and worry for all the false positives mean it's an awful expensive (in more ways than one) way to save lives.
Having two copies of the risk allele and being female do increase your chances, but the best advice is to avoid stress so throw away the report.
Eat a varied diet, get mild to moderate exercise, and use your brain.
But avoid stress and get enough sleep (clears out toxins in your brain, and the failure of the clearance mechanism is linked).
Probably die from slipping in the bathtub - you're at far more risk of a heart attack than AD, quite frankly. The above advice works for that too, with the addition of eating red meat less often and having some fish in your diet.
Look - news flash - you're going to die at some point. That's a given.
-- Tigger warning: This post may contain tiggers! --
My understanding is that the course of action if there is a positive screening result is worse on average for a patient than getting prostate cancer, when adjusted for the various risks. The treatment has risks of complications, and the risk of actually getting prostate cancer is low, so you're actually better off ignoring it.
It isn't about ignoring cancer - it is about ignoring a likely false positive when the reaction to the test is likely to cause other problems.
Times change.
It used to be that Appendectomies were done for almost no reason at all.
So lets pretend that we've just completed writing this code, as opposed to having just completed sabotaging it -Altera
1. your doctor is an idiot
Actually, there are MANY doctors who question the value of prostate screening. If you get a positive result, you aren't necessarily going to get cancer, but you WILL end up getting treatment. The treatment is not without its own risks. So you have the low risk of getting cancer and dying on the one hand, and the much higher risk of having other problems as a result of treatment on the other hand.
It isn't a clear-cut decision, and most patients probably aren't really given all the facts. You'd be amazed at how few modern treatments actually have clinical evidence to back them in terms of better outcomes. Sure, somebody who gets a bypass might live 10 more years, but what would have happened if they didn't get the bypass, and how many die from complications/etc? Bypass surgery probably isn't a good example there, but there are many of modern treatments that lack any proof that they actually result in any meaningful improvement of life. That doesn't mean that they don't - often nobody bothers to ask the question.
You may be interested in a collection of short stories called "Machine of Death." All the stories share a premise: there exists a machine which will tell you how you will die with 100% accuracy, though usually cryptically (e.g. old age could mean your own age, or you're hit by a car driven by a geezer whose driving ability is reduced by his age). Free digital copy here: http://machineofdeath.net/ebook
Some pretty thought provoking stuff, not to mention good fiction.
Statistical probabilities tell you EVERYTHING ABOUT EVERYONE and yet NOTHING ABOUT ANYONE.
Yes, if you take 1,000 people like your daughter then of those who live to age 65 or whatever, just about 550 of them are going to get Alzheimer's.
But each individual will have an ACTUAL rate of the disease of exactly 0% or 100%, and that 55% chance actually gives you NO information about which you will be.
And without those gene variations, she still might have a 10% say chance of getting the disease.
Behind the screen the DM rolls the dice. You don't get to see the results of the roll. Anyone who has played a D&D like game, or something like World of Warcraft which is so dependent on dice (random number generators) for the outcome of events, will know that it's hopeless to think too much about what the next roll of the dice will bring, because when you're rolling a lot of numbers between 1 and 100 on a regular basis, you're going to get numbers like 1,2,3 and, 98, 99, and 100 all the time, and you absolutely cannot develop any sort of intuition based on probability.
So lots of people with 55% chances will not get the disease, and lots of people with 10% chances will.
Even when your risk factor is 95%, there's no guarantee, and you should not be "surprised" if you turn out to have it happen to you after you thought you could just round the probability to the nearest value of 0 or 100.
People hate uncertainty. Given a probability most people will NEED to decide at that point whether the event will happen or not, because they can't stand to go through life in suspense. They will ask you "Ok, so that means I will get the disease?" when it means nothing of the sort.
A 55% chance to get terrible disease by age 65 is just NOT a reason to change your lifestyle IMHO.
For a good dose of reality, take 100 people age 65 and have them get their 23 and Me tests done and watch while they laugh at all the things they were at higher risk for that they DIDN'T get and all the things they were at low risk for that they DID get. If you do this (even for one sample, give a 23 and Me gift certificate to an older relative and see how much their results make you worry less) chances are it will make you worry about probability a lot less.
Statistics are great for determining insurance rates and public health policy, but they DO NOT ACTUALLY GIVE YOU ANY INFORMATION about whether YOU as a single individual will come out one way or the other.
There are a few "completely penetrant" genetic diseases (hemophilia, etc.) where if you have the gene then you WILL GET the disease. But almost everything 23 and Me tells you is about probabilities which are much less than certain and honestly nothing to get too worked up about.
G.
Actually, I thought the trend would be to perhaps test the kid before adopting him.
I know this sound harsh but, I just had a baby myself and it is terrifying to think of all the things that can possibly go wrong. Having the ability to do a full DNA scan before having/adopting a baby would be a great thing.
That might be long enough to get the kid signed up to Obama Care before it is repealed and they have a preexisting condition that is no longer covered.
If you weren't looking to be comforted and did want to be modded "Funny", I guess I should get the joke, but Taylor offers the sanest comment in the whole oiece. Let's repeat it: ' Worry more about the fact that when she's a teenager she might be driving around in cars with drunk boys.' Yup, something that has an unfortunately high chance of happening which will kill your teenager dead or destroy their life that you can actually try to prevent.
"The race is not always to the swift, nor the battle to the strong, but that's the way to bet.", as Damon Runyon said.
If you've got a 55% chance of Alzheimer's, you'd be foolish not to make at least some adjustments to your life, but a young kid doesn't need to know those facts just now. You can leave it until she's a young adult to tell her.
One thing she might do when she decides to have kids is use embryo selection to weed out the bad genes, so her children aren't burdened with the same worry.
Some genetic test results are interesting but aren't something you can do much about; others are things you should pay attention to. 23&me says I've got a higher-than-average risk of Type 1 Diabetes (dodged that) and a lower risk of Type 2 (which tends to develop in middle age and is strongly influenced by diet.) If it were the other way around, I'd hopefully be a lot more serious about diet and exercise than I am currently. (Like most American adults, I need to lose weight, but at least I don't need to be taking insulin or the various things they give you before that to keep my blood sugars in line.)
On the other hand, I'm apparently also at risk for male pattern baldness (who'd have guessed?) Not much I can do about that besides wear hats.
I know some people whose DNA testing results said they were more or less sensitive to commonly-used medicines, which says that if they end up taking them they should let their doctors know so they can adjust dosages or choose alternative drugs.
Bill Stewart
New Fast-Compression-only CPR http://preview.tinyurl.com/dy575ks
Now the kid will be highly motivated to start a career as a researcher on Alzheimer disease.
"doing brain games and more math" -- please do this to your kid regardless of testing and test results. :/