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alisande_gw

Have you had your DNA tested?

alisande
10 years ago

A friend was telling me the other day that she and her husband took the 23andMe DNA test, and found the results fascinating. It reveals your risk for certain diseases, and all sorts of other things, including genealogical information going back 500 years.

The test used to cost $299, but now it's $99. I'm thinking of doing it, but I told my friend I was afraid the results could send me into a permanent state of anxiety. LOL She pointed out that you get the test results online, and certain results, like Parkinson's and Alzheimer's, aren't revealed unless you specifically ask for them.

Hmm.....on the one hand, I'm not sure I want to know about the heavy hitters, but on the other hand I tend to be intensely curious about most things. I'm thinking about this....

Have you had the test?

Comments (49)

  • kathyg_in_mi
    10 years ago

    Haven't had it. Didn't know it was so affordable.
    Now that I know that I can have it if I so wish, I'm afraid to. Do we really want to know what is in the future? Health wise? I'm dealing with a bunch of new health issues and knowing there are more coming is so scary.
    Kathy G in MI

  • alisande
    Original Author
    10 years ago

    I've read a couple of good articles on it, and they point out that charting the risks doesn't mean diagnosis is an eventual sure thing. Genetic predisposition is only one factor; lifestyle and environmental play huge roles in our futures.

    I wish I could find one excellent article I read yesterday, written by a woman who had her adopted little girl's DNA tested. The company put her in touch with families of other children from that part of Ethiopa.

    I haven't read the stories at this link, but I plan to. I'll bet they're interesting.

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  • Chi
    10 years ago

    I have been tempted to do it! I think it's pretty neat.

  • alisande
    Original Author
    10 years ago

    I found the article I was looking for.

    It's here.

  • 3katz4me
    10 years ago

    Have you ever read The Immortal Life of Henrietta Lacks? Along the same lines when you give your sample to 23andMe you sign over the rights to this for-profit company to make a profit with your tissue sample should they find a way to do so at some point. Not that it's a bad thing but something to be aware of. It's not like their purpose for existing is to provide DNA reports to consumers. They're looking for bigger things.

  • alisande
    Original Author
    10 years ago

    The article I linked above talks about that. Of course I wouldn't expect the company to provide consumers with this information out of the goodness of its heart. They are in fact looking for bigger things. But not all of those things involve making money. For one thing, they have a specific focus on Parkinson's Disease (the founder's husband is at high risk), and are involved in its research. They offer a free test kit to anyone diagnosed with the disease.

    A quote from the article about the privacy issue:

    The company can share its data with third parties "[after] it has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence."

  • Terri_PacNW
    10 years ago

    Could care less..;)
    I'll take it as it comes..and not worry about what was.

    But I coulds see where those that love geneolgy could confirm more.

  • Rudebekia
    10 years ago

    I am planning on doing it. I'm very interested in seeing the results and would definitely want to know if I was predisposed to any disease. Knowledge is power!

  • Chi
    10 years ago

    It wouldn't bother me if results were shared. I give away DNA samples all day long anytime I touch something if anyone cared enough to collect! I think it's a great opportunity for scientific advancement.

  • oldfixer
    10 years ago

    Never did it, no current intentions to do so. If a lurking desire prompted action, it would be solely for genealogy purposes. Now that people have such options, would anyone scavenge one of those daily 'samples' (hair from a brush?) and save it, in case some future generation cared to do DNA?

  • mboston_gw
    10 years ago

    We just got my husband's back but not through 23 and Me. He did the Autosomal one through ancestry as we are trying to do a family tree and are in hopes it will lead us back beyond the 1700's. I am still sifting through the info they sent us but I have been in touch with a few "new" cousins and he does have common DNA markers with some that share ancestors back to the early 1700's.

    Not sure I would want to know the medical side of it. We live with enough anxiety already, esp. if its something that you can't do anything about.

  • maire_cate
    10 years ago

    Ancestry has a simplified description of their DNA test and what the results might show. I'd like to do it, I just haven't gotten around to it.

    Here is a link that might be useful: Ancestry

    This post was edited by maire_cate on Thu, Nov 21, 13 at 22:39

  • alisande
    Original Author
    10 years ago

    The Ancestry test sounds interesting. They don't say how much it costs. One reason why I'm thinking about taking the 23forMe test is that it includes tests for MTHFR (methylation). The methylation cycle removes toxins from the body. If there's a genetic defect, the person has trouble getting rid of toxins, and they linger in the body. If I have that defect, it would explain a lot.

    My doctor ordered the MTHFR test, which costs $150 at the lab. I tried to find out if Medicare will pay for it, but I was unsuccessful (after a long time on the phone). Rather than take the risk of ending up with a $150 bill, I thought I might spend $99 and get a lot more for my money. Thinking about it......

  • maire_cate
    10 years ago

    Ancestry's home page has a "Now $99" at the top.

    Here is a link that might be useful: more info

  • eccentric
    10 years ago

    Since the insurance bill just arrived - I have to ask. Any chance that life insurance companies - whether regular or travel/medical would use any of the findings as "pre-existing"!? Also, if I had the test done I would be paying for it without doubt. I live in Canada.

  • alisande
    Original Author
    10 years ago

    In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which makes it illegal for health insurers and employers to hold a person's genetic information against him or her. The premise behind it is that people have no control over their genetic makeup; therefore, why should we be penalized for it?

    But this federal protection doesn't cover long-term care insurance (although some states have banned the use of genetic information in all areas), and there is some concern that a long-term care insurance company might in the future ask a potential customer if she had genetic testing, and if the results linked her to a higher risk for Alzheimer's disease.

    That's just conjecture, of course. And to take it a step further, could they verify her answer? Or would would this dialogue take place in a kind of honor system?

  • rob333 (zone 7b)
    10 years ago

    eccentric,

    It's DE-identified. How will they know it's you? No worries! :)

    The company can share its data with third parties "[after] it has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence."

    ____________
    Oops! I meant to include the way that all institutions are required to strip information. I'm not from Miami, but this is right.

    Here is a link that might be useful: HIPAA's deidentification method

    This post was edited by rob333 on Fri, Nov 22, 13 at 14:24

  • Chi
    10 years ago

    I imagine there will be more laws set into place for protection as genetic testing becomes more and more common. Not to mention the lawsuits that would erupt if this information is leaked after being told it would be stripped of any identifying information. I believe in the not-too-distant future, genetic testing will be the norm.

  • Cherryfizz
    10 years ago

    I have been thinking I would like to get the genealogical testing done through Ancestry but not the one for diseases. Not sure how much their tests kits are.

    Because we have so much breast cancer in my family and my niece in her Mom's side she had been talking about getting tested for the gene. I don't know if she has had it done or not. I don't want to know about Alzheimer's. My Mom was the only one in her family to have it, her parents lived into their late 80's with their minds intact as did her sister and brother.

  • sjerin
    10 years ago

    This was on our cbs channel last night, though I didn't see it.

    Here is a link that might be useful: Easy DNA Test

  • mboston_gw
    10 years ago

    The Autosomal one we used was $100 last Jan. It showed that my husband was 60% Western European, 20% Irish, 11% British and the rest a smathering of others. We thought it would much higher British since we thought the Boston side was from either Scotland or England. We kinda forgot his mother's side has alot of German and then there is the French side on his father's side.

    What has been interesting is that they gave a list of people who share his DNA markers who have family trees on ancestry, those who have also been tested by their tests. We have quite a few who are as close as 4th cousins, many more that are 5-8th cousins. I have no idea how many there are, but I have barely made a dent. If you share exact people on your trees, they list the person, if its only a surname, then they list that. If your family tree is private, then you can go through their site to send a message that you would like to communicate with them, otherwise you can't reach them. Only people with public trees are available to contact through them.

  • jannie
    10 years ago

    Not meaning to offend anyone, but I think it's silly. We all know how to stay healthy, and when your number is up, that's it. I already know my basic family history from listening when older relatives talked.I'm German, French, and English by way of Canada.

  • grandmamary_ga
    10 years ago

    My husband did his through Ancestry and he learned that he was from Scandinavian ancestry. He knew his ancestors were from Scotland already. This just confirmed it to him. Didn't learn anything about health issues. His mom passed away from Alzheimer's. I guess he will have to spend a few more dollars to learn if he will be afflicted with this disease.
    My husband learned most of the same things that MBoston learned too. I don't know all the details in his report, just what he has mentioned to me. I think he only paid $79. Some kind of special he said. Been a while since he did his.

    Mary

  • dedtired
    10 years ago

    I'd love to learn more about my ancestry, although I pretty much know that I am Welsh and German on my mother's side and Polish and German on my father's. But who knows what surprises might turn up? As for the health tendencies, I am not sure. I would be so depressed to learn that I have a good chance for Alzheimer's, but on the other hand it would allow me to prepare and spare my family as much as possible. No one on either side of the family has had Alzheimer's.

    I worry more about my sons. Their father's grandfather had it and there was also heart disease in that family.

  • eccentric
    10 years ago

    It was funny. I asked my husband if he wanted to have his DNA tested and he immediately said "no" because of the insurance companies. Maybe it is a Cdn. thing!? I do understand that it is supposed to be confidential - but then there are so many horror stories about insurance out there these days. I have a pretty good idea of what I am at risk for - but lifestyle certainly will have some impact on what will or won't happen when it comes to family diseases. Or you can live a perfect lifestyle and come down with a terrible disease - you just never know.

  • rob333 (zone 7b)
    10 years ago

    Just one thought, I have had undiagnosed ailments that caused me pain until I knew what they were. It's good to know what you have so you can treat it and live a comfortable life. Does that help jannie?

    ______________________________
    In case you were wondering... I went in to get what I thought must be arthritis diagnosed. I could not sleep at all, hurting every which way I turned. When the doctor asked me what hurt, I replied "My back, my hips, well, everywhere". I admit she was an intern, but she decided to jump on the current bandwagon and prescribe medications for fibromyalgia--medications with some of the worst side effects. One of which CAUSED me to have depression. After one month or so of trying to find something and being really wary of the side effects, I quit trying to fix it. I decided I'd just live with an Aleve every night even though it was beginning to affect my blood pressure. One day, I woke up to sharp shooting pains and could barely moved. I crawled to the bathroom, taking three or so hours (truly! and it's maybe 20 feet away) to get there to find some sort of pain reliever. I went to the ER that day (on a stretcher!) and was diagnosed with a genetic bone disorder. After only one week of muscle relaxers and PT, I was pain free. Forever. I thank goodness someone finally found out what was wrong me, even though my number wasn't up. I'd pay money to have someone find out what's wrong and treat the proper thing any day.

  • alisande
    Original Author
    10 years ago

    Wow, Rob--that sounds like me (except for the diagnosis). I've been living with "everything hurts" for a long time. That's the main reason why I want to get tested for the MTHFR gene. But it's possible my problem is related to something else, and the 23andMe test covers the whole deal.

    So glad to hear you found your cause--and cure!

  • rob333 (zone 7b)
    10 years ago

    I hope you find your cause/cure too alisande! It's a long road when they can't figure it out, isn't it?

  • alisande
    Original Author
    10 years ago

    Uh-oh.....I ordered the 23andMe test this morning, but I donâÂÂt know if IâÂÂll end up getting it. Take a look at this:

    FDA letter

    I didnâÂÂt read the fine print (itâÂÂs all fine print), but it looks like the FDA is putting a stop to the tests, at least for now.

  • rob333 (zone 7b)
    10 years ago

    How'd you find that link to the FDA alisande?

  • alisande
    Original Author
    10 years ago

    I receive emails from MedPage Today (mostly directed at physicians), and the link was in today's email.

  • rob333 (zone 7b)
    10 years ago

    Cool! Thank you.

  • Elmer J Fudd
    10 years ago

    Here's an explanation with additional background re FDA action

    Here is a link that might be useful: USA Today article

  • maire_cate
    10 years ago

    Well that certainly puts a damper on 23 and ME. I wasn't aware that it was owned by Google. That alone would cause me to distrust their claims of privacy. Google (they're not alone of course) is notorious for maintaining all kinds of information that users are unaware of.

    While I've been toying with getting DNA testing, I'm not interested at all in the medical aspect - just a genealogy interest.

  • alisande
    Original Author
    10 years ago

    I didn't know Google was an investor in 23andMe either, although I guess it figures since the founder is/was married to a Google founder. That doesn't bother me as much as what the FDA said about the possibility of false positives.

    Thanks to my husband, a Ph.D. chemical engineer, I have a jaundiced view of lab testing in general, as he alerted me to the fact that test results are often in error. But for some reason I thought DNA was different. Assuming the lab people didn't confuse one person with another, I thought DNA was clear, with little to no room for error.

    The FDA indicates in their letter that there is plenty of room for error. I don't know what to believe, though. I am often in disagreement with the FDA, and don't automatically believe what they say in this case or any other.

    As usual, life is complicated.

  • alisande
    Original Author
    10 years ago

    I read this today:

    Nita Farahany, professor of law and philosophy at Duke, says the FDA was too heavy-handed in cracking down on personal genomics firm 23andMe. People "make health decisions based on their fitness trackers too. Is the FDA going to issue Fitbit and Nike cease and desist letters?"

  • joyfulguy
    10 years ago

    I tend more to the view that I like to know various kinds of information than to not know. Sort of the "knowledge is power" kind of thought.

    Doubt that I'm much interested in this, though ...

    ... (cause I might find out that I'm actually human?)

    ole joyful

  • User
    8 years ago
    last modified: 8 years ago

    A few random thoughts:

    The ancestry test is "on sale" from time to time. Usually $99 but I'm waiting for the $49 sale to buy more.

    The ancestry test will not test for health related issues. That would be 23andme but I'm not so sure they can do that any more. I think in 2013 they had to stop doing that.

    The Ancestry DNA test is not just to find out you came from England and Germany. It's more to find out who your relatives were, where they lived, what their life was like. People who are interested in genealogy want to find more relatives. I'm hoping someday to sort out the Bailey line.
    If I can find more cousins it will be more help in sorting out the ancestors.

    The genetic tests can't use hair from the hair brush. That would be a Forensic test done usually by law enforcement. A DNA genetic test for genealogy is not the same thing. The people I know who are really interested in family want more than a list of names and dates. We want to know who those people were.

    And then there's this developement:
    RIP Sorenson – A Crushing Loss

  • Kathsgrdn
    8 years ago

    So, is there a company that does this testing still? I've thought about it before and it would be interesting.

  • Alisande
    8 years ago

    Another old thread. Check out this newer one

    about 23andMe.

  • User
    8 years ago

    No way, Jose! It's a sure fire way of your insurance not helping you out when you need it because they can prove you have a pre-existing condition. :) I would rather not know either way.

  • User
    8 years ago

    My mother had multiple sclerosis for 50 years and died from it.

    My maternal grandmother had multiple sclerosis and died from it.

    My sisters and I have had the opportunity to have DNA testing. We have all declined.

  • jeff-1010
    8 years ago

    Check my DNA? I can save $100 and look in the mirror :-)

  • User
    8 years ago
    last modified: 8 years ago

    I bought my tests on sale @ $79.

  • ghoghunter
    8 years ago

    Yup! Had mine done, my father, my hubby and my daughter. We were all done at Ancestry. I am having a ball finding and connecting with distant cousins!!!

  • caflowerluver
    8 years ago

    "For one thing, they have a specific focus on Parkinson's Disease (the founder's husband is at high risk), and are involved in its research. They offer a free test kit to anyone diagnosed with the disease." alisande

    When I read that I went to their website and requested a free test since I have Parkinson's. Just received it earlier this week. After I went through the whole registration I found out I will only have access to ancestry information and not any health information. I would have liked to have had access to that health information but can't complain, it was free after all. Hope my DNA helps with the Parkinson's study.

    December 2013 – Pending an FDA decision, 23andMe no longer offers new customers access to health reports. Customers who received their health information prior to November 22, 2013 will still be able to see their health reports, but those who purchased after that time will only receive their ancestry information as well as access to their uninterpreted raw data.


  • Alisande
    8 years ago

    Caflowerluver, as mentioned on another thread, if not this one, you can easily have your 23andMe info uploaded to another website to receive a report on the health aspects of your genes. Promethease.com is a good one. They charge only $5.

    Best of luck with your Parkinson's.

  • caflowerluver
    8 years ago

    Alisande - Thanks for the information and well wishes.