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Genetic screening for ApoE4 and Alzheimer's
Old 06-15-2012, 11:26 PM   #1
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Genetic screening for ApoE4 and Alzheimer's

Anyone here have any experience with genetic testing?

My father is 78 years old and into about his fourth year of Alzheimer's, with symptoms nearing the end of mid-stage. He's had other health issues (high blood pressure, decades of smoking, malnutrition, multiple myeloma) that have complicated his prognosis. Everything I read says that nobody can really predict how long an individual Alzheimer's patient will survive, any more than we can predict our own individual longevity. Fortunately he's coping, he's happy, and his pension & assets should handle at least a decade of care.

His father probably started showing signs of dementia in his late 70s, and Gramps lived in a care facility from ages 84-97. Alzheimer's wasn't commonly diagnosed in his era, and I remember that Gramps' childhood memories were surprisingly detailed, so I don't know whether he'd be considered to have Alzheimer's. No other data is available.

The rest of my family tree has missing limbs. My mother died of breast cancer at age 49 and family legend is that my maternal grandfather died of a cerebral hemorrhage at age 40. My maternal grandmother lived to age 90 but spent a couple of years as a bitter dementia patient... much in line with her personality. I don't think Alzheimer's was commonly diagnosed in her era either.

Nonetheless my brother and I are gazing upon this family tree with a little consternation. We have no idea how our genetic revolver is loaded or how many times the trigger has been pulled. We posters on this board have discussed the idea of genetic testing and other diagnostic exams before, and many of us prefer to be blissfully ignorant. However I'm the type of person who wants to know. I agree that no matter your genotype it still makes sense to eat right and to exercise and to have a long-term care plan, but if I know that I'm at the top of the Alzheimer's genetic scorecard then I'm much more likely to stop dithering and make the permanent lifestyle changes. I'd also be much more aggressive in cognitive testing and medications like Aricept or Namenda. Hell, maybe I'll even start studying Mandarin and classic-rock guitar.

Whether I want my spouse to know my genetic susceptibility to Alzheimer's... well, that's a whole 'nother thread. Maybe if I practice spelling backwards for a couple decades I'll be able to hide the symptoms.

The latest Alzheimer's research is spending a lot of time & money on the ApoE4 gene:
Alzheimer's Gene ApoE4 Causes Brain's Blood Vessels to Leak, Die | Alzheimer's Reading Room
Alzheimer's: Is it in your genes? - MayoClinic.com
Alzheimer's Disease Genetics Fact Sheet | National Institute on Aging
Apolipoprotein E - Wikipedia, the free encyclopedia

ApoE4 is probably only one of several factors, but there's correlation with inheriting a double set and higher incidences of Alzheimer's. It's not necessarily causation, your lifestyle may affect the result, and the other usual disclaimers. However I'd rather jump the gun on testing for my own personal knowledge, as well as beating the insurance industry to the punch. Based on results from 23andMe.com, I might want to buy a LTC policy in the next decade-- before the insurance companies start testing everyone.

Anyone else currently subscribed to 23andMe? Any other genetic testing issues or anything you wish you'd done differently?
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Old 06-16-2012, 01:42 AM   #2
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I have not done this, but looked it up and find it very interesting.

I have done some limited genetic testing of children. For one child, we did some genetic testing which dealt with medication response. His physician uses the information to determine how quickly someone metabolizes certain medication which is important to dosage. The testing was expensive (this was several years ago so it is probably cheaper now), but did provide some valuable information.

We also have 2 children who were adopted from another country. Soon after we adopted them, I realized that they seemed to have a connective tissue disorder which is inherited. There are several variants of the disorder. One if rare, but extremely serious and usually results in death in early mid-life. The other variants can vary in severity but are not life threatening. There is a DNA test whether a child has the serious, life-threatening version (if not, it doesn't tell you what variant the person does have, just that it doesn't have the life-threatening type).

Based upon overall information, it seemed unlikely that they had the life-threatening version but it was possible. So we had the test done. We only checked one child as they were biological siblings so the results would apply for both of them.

The testing turned out fine and they didn't have the life threatening version.

A factor to me in this type of testing is what will you do with the information and can you do anything with it. I read something that said that something like 95% of people who are known to be at risk for Huntington's disease do not get testing. The disease is fatal and unavoidable and you can't do anything to prevent it, so most people don't get tested which I can understand because they don't get any useful information.

For my children that we tested, it would have made a difference if they had the life threatening variant as it would have resulted in major changes in how they lived so as to try to avoid problems and would have meant very minor injuries or illnesses would have needed major care and this absolutely would have needed to be known before any surgery, etc.

For me, I am particularly intrigued by what I read at 23andme because I have almost no information about my paternal side. I was adopted at birth. I found my birthmother many years later and we have an ongoing relationship. So I know quite a bit about about my family history and medical history on the maternal side.

However, my birthmother lost touch with my birthfather many, many years ago and I have been unable to find him. So, I know nothing about ancestry or medical history on the paternal side. I mean I know he appeared Caucasian and had brown eyes but that is about it. And, knowing zero medical history on the paternal side makes me more interested in the genetic testing.

That said -- the risk is that I find out something truly awful from the testing. The reason that 95% of people who are at risk of Huntington's don't get tested is that they know they are at risk because the disease is in their family. So they make a conscious decision to test or not be tested. For my kids who had the risk of the life-threatening disease it was obvious the risk was there once we knew they had the disease. But -- in my case -- I don't know anything about my paternal genetics or paternal family medical history. And my birthmother hasn't seen my birthfather since he was 30ish. It has crossed my mind that one reason I've been so spectacularly unsuccessful at finding him is that he died young. So -- maybe genetic testing would be valuable but there is a risk that it provides information that is negative. If it is something I can do something about to lower the risk then that is fine. But -- what if it isn't?
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Old 06-16-2012, 02:03 AM   #3
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If I was you Nords, I wouldn't waste the time, money and possible worry. The big one is early onset AD and already you are too old. Besides, if the price of LTC insurance is the issue, buy it. What difference is it if you have a 20% (wild guess by me) chance of developing AD just by being a member of homo-sapiens vs a 60% (wild guess by me) chance of developing it by virtue of ancestry. H3ll, you may break your neck surfing. Buy the peace of mind.

I am not following AD but such diseases interest me. DF died many years ago after a 4 year, steady, physical and mental degeneration. A few years after he died, some researcher looked at tissue saved from autopsy and diagnosed sCJD. DB was diagnosed with MS about 4 years ago. Even though I know that:
  • sCJD is not inheritable
  • sCJD is not commumicable
  • doctors aren't perfect when it comes to MS diagnosis
I wonder, DB's symtoms are following dad's in an amazing manner. What's the future?


On an aside, a friend's mother died of Huntington's Disease when we were in our late teens. He spent many years worrying about it, he had a 50% risk. When he was in his late 30's a genetic test was developed. No need to take it, he should have already started showing symptoms. Trouble is/was, he had already decided he was doomed and structured his life so that it ended early. Now he is screwed financially (but of his own doing).


Life will hand you what it will. If you need LTC insurance (and you may for reasons other than AD) buy it. If you can self insure then don't. To me it's a bit like trying to "time the market". As always, YMMV.

Of course, I wish you good luck and good health.
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Old 06-16-2012, 06:57 AM   #4
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Check this out about a possible new vaccine: http://www.health.harvard.edu/blog/e...e-201206124878
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Old 06-16-2012, 08:47 AM   #5
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It would be a fun novelty, but the quick look at the reviews of direct-to-customer gene testing are mixed, and the tests for specific conditions are more accurate than the shotgun approach., Many sources (via Google) cite the infancy of the field, and that environmental factors play an enormous role in whether or nor these genes activated, cautioning customers to put the results in context.

These articles sum up the con and pro views. (There are many blog posts by individuals as well.)

http://independentsciencenews.org/ne...usiness-model/

“Most diseases in most people are not predictable from people’s genes,” said Dr Helen Wallace of GeneWatch UK “23andMe should start being more honest with its customers and admit most gene tests that it sells online are meaningless. Both its investors and its customers need to know that genetic predictions will always have fundamental limitations. These findings show that 23andMe’s product can only ever get a little bit less useless as more and more research is done.”


http://www.wired.com/wiredscience/20...tic-test/48771

"Finally, if you find something you think is truly worrying, follow up with an independent expert (a doctor or genetic counsellor for health-related matters) to have the results confirmed and put in context before making any life-changing decisions. These aren’t clinical tests (and aren’t labelled as such); you should treat them as providing you with information, not definitive answers, and certainly not diagnoses. However, be aware that most doctors are ill-prepared to deal with the types of complex information provided by a genome scan, so make the process as easy for them as possible (most companies provide a simplified print-out of results you can present to a clinician)."


For my own opinion, you have intrigued me. I am now considering it as an entertainment and, as you suggest, something that might kick me into eating my damned vegetables in sufficient quantities to improve general health. I'll budget for it as next month's fun splurge and reward for getting through the next five hell weeks at work--if my attention span lasts that long.
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Old 06-16-2012, 09:18 AM   #6
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When my mother was diagnosed with Alzheimer's, ten years ago, I was very concerned. Two of her brothers had already been diagnosed. Since then her younger sister has been diagnosed with the disease. That is a total of four children out of seven who have been diagnosed with Alzheimer's disease. One died a number of years ago from other causes and the other two are doing well and mentally sharp even though one is in her 80's and the other is 90.

After my mother's diagnosis, I tried to find a researcher who would test for the APOE variant and was not successful. I was told, "we can and will test for it, but we can't give you the results. A few years back when home DNA testing first came on the market, it specifically excluded testing for the APOE variant and I had given up.

I DO want to know. I was not aware of 23 and me and am now very intrigued. I already have LTC ins (because of the family history). I would be concerned about insurance companies using testing like this to set rates.
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Old 06-16-2012, 10:02 AM   #7
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In theory, in the U.S., you are protected from discrimination.

http://www.genome.gov/10002328

What's the Genetic Information Nondiscrimination Act (GINA)?

The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.
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Old 06-16-2012, 10:34 AM   #8
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Interesting. Nords, I believe you to be braver than I am. I wouldn't want to know, and if I did and the news was bad, I would dismiss it as being inaccurate. Concerning your past genetic history, I share some of the same issues, but for only the ones who made it into their 80s and 90s. It is hard to know exactly what they may have had. "Senility" "hardening of the arteries" (my personal favorite from days gone by) "Alzheimer's" "dementia" all get tossed around in the same hat but the general public doesn't always know the difference. As for the protection from insurance company afforded by the law, I certainly don't underestimate the insurance company getting around this somehow. Especially if medical records become more available electronically and shared amongst providers and insurance companies. I will leave no electronic trail for them to cancel me!
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Old 06-16-2012, 11:29 AM   #9
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In theory, in the U.S., you are protected from discrimination.

In theory, you are protected from age discrimination too.
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Old 06-18-2012, 03:39 PM   #10
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My worry isn't Alzheimers... it's cancer. And I did pay to test for the BRCA 1 and 2 genes.

Back story. 3 of 4 grandparents died of cancer, including paternal grandmother of breast cancer.
Mom was an only child, so no aunts/uncles/cousins to add data. Mom died of ovarian cancer.
Dad beat prostate cancer. Only to get Multiple Myeloma (completely unrelated to his first cancer). He died of septic pneumonia because of the steroid treatment he was on for the MM.
Dad only has one sib - she's ok. but 2 of my 3 cousins have had cancer incidents.
My brother beat melanoma. Cost him a lymph node. Then he got an obscure, aggressive cancer: neuroendocrine carcinoma. (not to be confused with the carcinoid). When we were dealing with his treatment the oncologists got the family history - she was flabbergasted by the numbers and urged my sister and I to get tested for the breast cancer gene given my paternal grandmother and mom.

I can tell you it was scary. I tried to get my insurance to cover it but without aunts/cousins with breast cancer, no go. (Small family's on both sides don't factor in.) So I paid about $3k to have it done at a local university cancer center.

I had a plan - it's mitigatable to a large extent. I could prophylactically remove my breasts and reproductive organs. I was 43 at the time, done having/nursing my kids. Close enough to menopause that removing my ovaries was only moving menopause 8 or so years early. I joked with DH that I'd once again have perky ta-tas.

Fortunately, I don't have the gene. It was a HUGE relief. DH has to live with the original model ta-tas.

I would not test if it did not provide action to improve one's odds. For me, I was willing to do the double mastectomy and oophorectomy. My sister, with the same family history chose not to get tested. Her choice. She also said she's wasn't sure she'd be ready to surgically remove stuff "just in case". Again her choice. We both made the right decisions for ourselves.
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Old 06-19-2012, 06:14 PM   #11
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I would not test if it did not provide action to improve one's odds

This makes a lot of sense. However, in the case of Alzheimer's, there doesn't seem to be much one can do to improve one's odds (although there is some indication that a healthy lifestyle, diet, exercise may help).I have decided that I do want to know and have ordered the kit. Best case scenario, I have no more risk than the general population. This would be an enormous relief. Worst case scenario, I find I have much higher risk than the general population; in which case, I will continue paying the LTCi premiums no matter how much they increase. And probably some long, heart to heart discussions with DH. I probably would not tell my children......
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Old 06-19-2012, 08:29 PM   #12
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Originally Posted by dmdunca44 View Post
I have decided that I do want to know and have ordered the kit.
Please let us know how well 23andMe follows up with the results and the explanations...
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Old 06-19-2012, 08:53 PM   #13
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Please let us know how well 23andMe follows up with the results and the explanations...
Will do. I spent a fair amount of time on their website today (after registering - you don't have to purchase anything to register). They have a pretty good explanation of the variants and possible combinations. Also a video discussing it. You can purchase the test and opt not to see the APOE gene results. But, of course, that's exactly what I do want to see.
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Old 06-19-2012, 10:19 PM   #14
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My paternal grandmother had dementia, Dad died of Alzheimer's (organ failure is the last stage) in his early 70's after 10 or so years of noticeable mental decline. Mom was able to care for him until the last 3 months or so, so LTC wouldn't have helped much. Mom's family is pretty healthy. I'm certainly concerned. It's bad enough already just being "old". I'll probably get tested eventually, but it doesn't seem really useful just now and will be cheaper and better the longer I wait.
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Old 06-20-2012, 11:33 AM   #15
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This may be of interest as to designing a self-defense program against AD: http://people.csail.mit.edu/seneff/EJIM_PUBLISHED.pdf
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Old 06-20-2012, 06:39 PM   #16
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This may be of interest as to designing a self-defense program against AD: http://people.csail.mit.edu/seneff/EJIM_PUBLISHED.pdf
Here, let me get that for you.
Quote:
Nutrition and Alzheimer's disease: The detrimental role of a high carbohydrate diet
Alzheimer's disease is a devastating disease whose recent increase in incidence rates has broad implications for rising health care costs. Huge amounts of research money are currently being invested in seeking the underlying cause, with corresponding progress in understanding the disease progression. In this paper, we highlight how an excess of dietary carbohydrates, particularly fructose, alongside a relative deficiency in dietary fats and cholesterol, may lead to the development of Alzheimer's disease. A first step in the pathophysiology of the disease is represented by advanced glycation end-products in crucial plasma proteins concerned with fat, cholesterol, and oxygen transport. This leads to cholesterol deficiency in neurons, which significantly impairs their ability to function. Over time, a cascade response leads to impaired glutamate signaling, increased oxidative damage, mitochondrial and lysosomal dysfunction, increased risk to microbial infection, and, ultimately, apoptosis. Other neurodegenerative diseases share many properties with Alzheimer's disease, and may also be due in large part to this same underlying cause.
2011 European Federation of Internal Medicine. Published by Elsevier B.V.
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Old 06-22-2012, 06:40 PM   #17
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Update: The kit arrived today. Clear instructions (with pictures). Per the instructions, I registered the barcode on the website under my account. Will mail the kit back tomorrow. They said 2-3 weeks for results.
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Old 07-03-2012, 04:30 PM   #18
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Update: I recieved an email today from 23andme saying that my results were ready. It's only been a week since they got the kit back and I was not expecting results for at least another week. So I'm pleasantly surprised at the speed.
It turns out that I don't have the APoE variant (4) that is associated with increased risk of Alzheimer's disease. Needless to say I am very, very happy that I had this done and I'm impressed with 23andme. $300 well spent.
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Old 07-03-2012, 04:55 PM   #19
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Update: I recieved an email today from 23andme saying that my results were ready. It's only been a week since they got the kit back and I was not expecting results for at least another week. So I'm pleasantly surprised at the speed.
It turns out that I don't have the APoE variant (4) that is associated with increased risk of Alzheimer's disease. Needless to say I am very, very happy that I had this done and I'm impressed with 23andme. $300 well spent.

How valuable do you feel any of the other information was? (I am not asking you for your personal results -- just an overview of what you thought about the other information available).

I am strongly considering do this mostly because I am adopted and have limited information. I do have contact with my birthmother so I know stuff about the side of my genes but I know zero about the paternal side. So being able to get anything would be helpful. I'm not actually sure if I want to know the APoE stuff, but I am interested in everything else if it gives any information of value....
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Old 07-03-2012, 06:24 PM   #20
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Well, right now, only the health results are available. They said to allow another week for the ancestry, relative results. I'll post an update when that information is available.
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