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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
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.
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"
Finally! A year of moderation! Ready for 2019?
-- Vincent, Gattaca
Welcome to the Panopticon. Used to be a prison, now it's your home.
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.
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 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?
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
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.
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?
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.
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...
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
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...
Part of the US's vaunted 5 year cancer survival rates vs European single payer systems isn't due to screenings leading to earlier treatment, its due to the disease running the same course over the same period of years and killing the same number of people but being detected earlier in the progression. Imagine a deadly cancer for which there are early screening tests but no treatments at all. The screening typically finds the cancer 4-8 years before death, otherwise the cancer is usually diagnosed via symptoms 1-4 years before death. One country uses the screening test, the other does not. Guess which one has a better 5-year survival rate?
That's an extreme analogy of course, and screening does save lives, but screening can also artificially inflate survival statistics. Cancer mortality rates are the way to go, and overall the US is more or less tied with the EU. For the most preventable common cancer (lung), the US is actually worse than the EU:
http://theincidentaleconomist.com/wordpress/how-do-we-rate-the-quality-of-the-us-health-care-system-disease-care/
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"
Or women could be made "obsolete" (whatever that means).
Because if I have the tech readily available to "artificially create" to produce "Superior Sperm" (whatever that means) then it's not to much of a stretch that I could also use an "artificial womb" or artificial surrogate.
In any case, it's always amusing when people begin to question the way Mother Nature designed things. (yes I am aware that my writing implies a conscious effort on Natures part and clashes with my latter comment.)
As though somehow Man could do it better, think about it, we arose from a perfect system only to question it, and there in lies the seed of failure that we sow so often.
It is difficult for me to escape the human centric view espoused by the failed religions of Judaism, Catholicism, and Islam, if I have ever escaped it.
But like Spinoza, I too believe that Nature (God as Spinoza defined) is perfect (in the sense that it follows the laws that govern), it had to be, that only Man is flawed and therefore interprets Nature as wrong or failed.
"If any question why we died, Tell them because our fathers lied."