Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 12:24:07 GMT -5
So the "Elderly father" thread on YM is getting into some very sticky and unanswerable territory.
Along that line, I recently learned that there are companies who will (for a fee) test your DNA and give you the results showing your risk level for certain diseases & conditions. The costs vary: 23andme charges $299 at the low end, Pathway genomics charges $1100; the other two you have to go through your doctor, so the charge isn't posted.
Anyway, I already know that I have a higher risk level for Alzheimer's because of a strong family history. I also know that there is a gene called "APOE" that has three variants. People with the APOE-4 variant are at a higher risk level. 23andme does test and can give you the APOE variant.
After some soul searching (as in "what, if anything, will I do if I test positive for that variant") I've decided that I do want to know. Having the APOE-4 variant does not mean one WILL develop Alz; it simply indicates a higher risk level.. OTOH, not having the variant means having the same risk level as the general population.
I ordered the kit yesterday......
My question is, "What would you do? " And, "Why?"
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kindthatjingles
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Post by kindthatjingles on Jun 20, 2012 12:29:26 GMT -5
I have gotten tested for certain things because I wanted to know.
It has made me vigilant about further screenings
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kittensaver
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Post by kittensaver on Jun 20, 2012 12:54:06 GMT -5
Put me in the "not gonna do it" column. Risk is merely that: risk. If you dig deeper into the DNA research, you will see an almost universal agreement among scientists that the genetics is only 20% of the equation. The other 80% risk factor is lifestyle ("genetics may load the gun, but lifestyle pulls the trigger"). I figure I have a much greater chance of warding off horrible diseases and bad medical endings by practicing prevention and engaging in healthy behaviors. But that's just my choice - I know others may choose differently.
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 12:56:11 GMT -5
If you dig deeper into the DNA research, you will see an almost universal agreement among scientists that the genetics is only 20% of the equation. The other 80% risk factor is lifestyle
This may be true for most diseases; but it is not the case for Alz... Research indicates that 60% of the risk is heredity;
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kittensaver
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Post by kittensaver on Jun 20, 2012 12:57:53 GMT -5
If you dig deeper into the DNA research, you will see an almost universal agreement among scientists that the genetics is only 20% of the equation. The other 80% risk factor is lifestyle This may be true for most diseases; but it is not the case for Alz... Research indicates that 60% of the risk is heredity; Okay, so you may be at higher risk, but what can you do about it except vigilance and prevention?
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 13:02:33 GMT -5
I wouldn't do it. Just because you have the marker DOES NOT mean that you will get it.
For example, breast cancer, just because you have the BRACA mutation does not mean you will get breast cancer or even that specific breast cancer. We are now learning there are as many as 5-8 different types of breast cancer and only TWO are linked to BRACA and the genetic pathway concerning that type of cancer is only just beginning to be understood.
Our genes mutate ALL THE TIME. They are continously copying themselves and mistakes happen. You could have no markers whatsoever and still succumb to dementia. You could have every marker in the book but the rest of the pathway doesn't kick in so you never develop it.
There are only handful of things that science knows for sure if you have the marker, you'll get it.
I would not waste my money. Why sit around and obsess over hte fact that I might have a particular mutation? There is such a thing as too much information and I think these DNA kits are one of them.
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kittensaver
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Post by kittensaver on Jun 20, 2012 13:30:05 GMT -5
I wouldn't do it. Just because you have the marker DOES NOT mean that you will get it. For example, breast cancer, just because you have the BRACA mutation does not mean you will get breast cancer or even that specific breast cancer. We are now learning there are as many as 5-8 different types of breast cancer and only TWO are linked to BRACA and the genetic pathway concerning that type of cancer is only just beginning to be understood. Our genes mutate ALL THE TIME. They are continously copying themselves and mistakes happen. You could have no markers whatsoever and still succumb to dementia. You could have every marker in the book but the rest of the pathway doesn't kick in so you never develop it. There are only handful of things that science knows for sure if you have the marker, you'll get it. I would not waste my money. Why sit around and obsess over hte fact that I might have a particular mutation? There is such a thing as too much information and I think these DNA kits are one of them. Exactly. Karma for you! To find out about the risk of disease you can do virtually nothing about except practice prevention and a healthy lifestyle is (at least to me) pointless - why not just live well and not make yourself worry about yet another thing? And in the process of living well you keep your DNA strong and your telemeres long so they DON'T break/shorten and mutate . . . Commercial (marketed to the general public) DNA testing seems like just another way for the pharmaecutical industry to separate the anxious public from its money. I wouldn't fall for it either. But again, that's just me.
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Post by The Walk of the Penguin Mich on Jun 20, 2012 13:31:57 GMT -5
The only place I would do a genetic screening like this would be to determine if I carried the Huntington's chorea gene. If I had a family history of sickle cell anemia or cystic fibrosis, I'd probably look to see if I was a carrier if I was interested in reproducing.
Otherwise, nope. Don't want to give any insurance company the opportunity not to pay out if the event occurs.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 13:33:54 GMT -5
Commercial (marketed to the general public) DNA testing seems like just another way for the pharmaecutical industry to separate the anxious public from its moneyI know. Why didn't I think of it first?!
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Phoenix84
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Post by Phoenix84 on Jun 20, 2012 13:36:03 GMT -5
I don't see the point. If you do have a genetic predisposition toward something like Alzheimer's, so what? There's really not much you can do about it except for worrying about getting it. And I try to not worry about things I can't control. Besides, something has to get us sooner or later.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 13:42:27 GMT -5
Even if you have the marker for Alzheimer's something you had no genetic marker for whatsoever could sneak up on you and kill you first.
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 13:55:11 GMT -5
All good points. But I still want to know. In the first place, it is possible that I don't have the gene variant, therefore no more risk than the general population. If that were the case, I'd be hugely relieved. OTOH, if I do have the gene variant, I'd be sure to keep up my LTC insurance, no matter what. And if I did not have LTC insurance and found out that I has the gene variant, I'd take it out.
Mostly, there is simply something in me that wants to know. I undstand why some would not, but that is me.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 14:05:35 GMT -5
That $299 you just spent is going to result in you having to eat cat food at the nursing home. Please keep in mind that just because you get back some results doesn't always mean they are accurate. You have no way of knowing the lab practices of the company you are paying. It is extremely easy to contaminate samples and screw up results. I'd just keep the LTC regardless if it were me. That's not a decision I would make based on results from a lab selling DNA kits to the general public.
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kittensaver
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Post by kittensaver on Jun 20, 2012 14:09:33 GMT -5
That $299 you just spent is going to result in you having to eat cat food at the nursing home. Please keep in mind that just because you get back some results doesn't always mean they are accurate. You have no way of knowing the lab practices of the company you are paying. It is extremely easy to contaminate samples and screw up results. I'd just keep the LTC regardless if it were me. That's not a decision I would make based on results from a lab selling DNA kits to the general public. And if you do go ahead with the test, I'd take measures to hide the fact (ESPECIALLY from your insurance carrier) that you had the test done. If they discover it they could well use it to deny or revoke your coverage.
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 14:34:54 GMT -5
And if you do go ahead with the test, I'd take measures to hide the fact (ESPECIALLY from your insurance carrier) that you had the test done. If they discover it they could well use it to deny or revoke your coverage. Well I certainly would not broadcast the fact. but they could not use it to deny or revoke my coverage without violating the GINA law: 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.As far as "what's the point since there is nothing I can do about it?". Valid question. Mostly it's my own desire to know. But, if I did test positive for the variant, I'd be on the lookout for studies to participate in. And I'll keep the LTC ins regardless of the results. That $299 you just spent is going to result in you having to eat cat food at the nursing home. Yeah, probably. But if I have Alz, I won't know, right?
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Angel!
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Post by Angel! on Jun 20, 2012 14:49:45 GMT -5
I'm surprised how people wouldn't want it done. I think it is interesting - using science to look at your genes & learn more about yourself. I looked into buying the 23andme not to long ago, but haven't done it yet & thought it might be a cool christmas present to others. You can look at a sample profile & the amount of info they provide is astounding to me. Although I was disappointed to see many of the traits haven't been thoroughly studied as to their links to the genes, but at least they rate the results based on how thoroughly the trait has been studied & the confidence of the results. I also like that they will keep your profile/DNA if you choose & continue to update it based on latest research.
Maybe it is just me, but I think it is really cool.
I wouldn't necessarily make any life decisions off this info though. Aside from as GG said making LTC insurance a priority if you are at higher risk of certain diseases. Perhaps choosing to get certain tests done more often (or at all) if you are at risk for other things.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 14:51:46 GMT -5
If I was going to pay money for my DNA I'd send it to that lady that makes art out of the results. That's pretty cool. If I wanted to run my DNA for the hell of it I could do it for free here, all I'd need to do is swab my cheek. Not sure the boss would approve though.
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 14:55:24 GMT -5
This is being discussed on another board I frequent. One woman had a strong family history of cancer. She chose to be tested for the breast cancer gene (paid $3K for the test). Her plan, if she tested positive, was to have both breasts removed along with her ovaries & uterus. (And have the breasts reconstructed). She was 43. She ended up testing negative so was hugely relieved.
The woman who did my mamogram a few months back, has a strong history of breast cancer. She chose to have a double mastectomy as a prevention. I sure would not take that step without the DNA test first....
I'm finding the whole topic really interesting.
23andme has forums where folks discuss results, etc
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 14:56:11 GMT -5
If I was going to pay money for my DNA I'd send it to that lady that makes art out of the results. That's pretty cool. If I wanted to run my DNA for the hell of it I could do it for free here, all I'd need to do is swab my cheek. Not sure the boss would approve though. Well, shoot, DQ, why didn't you post that earlier? I could have saved myself $299 and mailed you the spit.
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Angel!
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Post by Angel! on Jun 20, 2012 15:05:54 GMT -5
This is being discussed on another board I frequent. One woman had a strong family history of cancer. She chose to be tested for the breast cancer gene (paid $3K for the test). Her plan, if she tested positive, was to have both breasts removed along with her ovaries & uterus. (And have the breasts reconstructed). She was 43. She ended up testing negative so was hugely relieved. The woman who did my mamogram a few months back, has a strong history of breast cancer. She chose to have a double mastectomy as a prevention. I sure would not take that step without the DNA test first.... I don't think I would have taken that step with or without the DNA test. I would think going in for extra mammograms & being more cautious about self-testing would be as far as I go. Of course, that is one thing I don't seem to have in my family, so I have never seen a loved one suffer through that. The stuff I am more likely to test positive for can't be prevented with some surgery. I not sure how I feel about testing my kids. In one way I really want to, but at the same time it might super depress me if I find they are high risk for bad things. It would bother me far more to learn they are at high risk for something than to learn I am high risk. It would feel like it is my fault for giving them bad genes
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 20, 2012 15:08:45 GMT -5
Well, shoot, DQ, why didn't you post that earlier? I could have saved myself $299 and mailed you the spitI didn't say I would do YOURs for free. Moocher. ;D
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 15:12:02 GMT -5
Well, shoot, DQ, why didn't you post that earlier? I could have saved myself $299 and mailed you the spitI didn't say I would do YOURs for free. Moocher. ;D
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Martivir
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Post by Martivir on Jun 20, 2012 15:12:40 GMT -5
I figure I'm going to die anyways so why bother worrying. On the other hand I am considering genetic testing to see if I'm a carrier for something that doesn't affect me but will affect my kids.
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Gardening Grandma
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Post by Gardening Grandma on Jun 20, 2012 15:15:25 GMT -5
On the other hand I am considering genetic testing to see if I'm a carrier for something that doesn't affect me but will affect my kids.
If your kids are already here, what could/would you do about it?
If you don't have kids yet, would if affect your decision to have them?
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kittensaver
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Post by kittensaver on Jun 20, 2012 15:17:43 GMT -5
And if you do go ahead with the test, I'd take measures to hide the fact (ESPECIALLY from your insurance carrier) that you had the test done. If they discover it they could well use it to deny or revoke your coverage.
Well I certainly would not broadcast the fact. but they could not use it to deny or revoke my coverage without violating the GINA law: 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.
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Well good luck to you on that one! Because of course no insurance company has ever committed subterfuge to violate anyone's rights because they want to save a buck - - - :-( :-(
Sorry to be so cynical, but I work in the public mental health system and I see people's legal/medical/insurance "rights" get ignored or tramped on all the time . . .
Again, just my perspective.
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Angel!
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Post by Angel! on Jun 20, 2012 15:24:17 GMT -5
I figure I'm going to die anyways so why bother worrying. I guess if the results might make you worry, then yeah, why bother. Honestly, the results wouldn't worry me. They wouldn't bother me anymore than already knowing that Dad has MS & that is somewhat inheritable, Grandma has alzeihmers, and every women in my family going back decades has died from heart problems. I just think the info is sweet. They trace your genetic origins too for all the genes. Mine is probably all european, but my kid's is probably really interesting. Plus the tracing back maternal & paternal lines. The results would be freaking fascinating.
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Angel!
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Post by Angel! on Jun 20, 2012 15:28:40 GMT -5
If you don't have kids yet, would if affect your decision to have them? If I was a carrier of certain diseases like CF or sickle cell & my husband was also, I likely would not have children. If any of those diseases ran in my family where I might be a carrier, then I would totally get tested. But it was pretty much a non-issue since ex & I come from different ethnic groups, so the likelihood of both of us carrying one of these genes was pretty small. Plus neither of us have any of those type diseases in our families also making it very unlikely.
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kindthatjingles
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Post by kindthatjingles on Jun 20, 2012 15:32:28 GMT -5
Well, shoot, DQ, why didn't you post that earlier? I could have saved myself $299 and mailed you the spitI didn't say I would do YOURs for free. Moocher. ;D Drama, you run my DNA I will get you CWS passes
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movingforward
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Post by movingforward on Jun 20, 2012 15:33:29 GMT -5
This is being discussed on another board I frequent. One woman had a strong family history of cancer. She chose to be tested for the breast cancer gene (paid $3K for the test). Her plan, if she tested positive, was to have both breasts removed along with her ovaries & uterus. (And have the breasts reconstructed). She was 43. She ended up testing negative so was hugely relieved. The woman who did my mamogram a few months back, has a strong history of breast cancer. She chose to have a double mastectomy as a prevention. I sure would not take that step without the DNA test first.... I'm finding the whole topic really interesting. 23andme has forums where folks discuss results, etc My supervisor at my last place of employment had that test done. She had previously had breast cancer about 15 yrs before and had already had one breast removed and reconstructed. She did the test in 2010 and ended up having her ovaries and her other breast removed and reconstructed as a preventative measure. She was 58.
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Post by The Walk of the Penguin Mich on Jun 20, 2012 15:37:31 GMT -5
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.
I wonder how this handles long term disability policies?
In any case, I still would not do it.
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