23andMe MPN Research Initiative

Have you heard of 23andMe, yet?  Self-described as a ‘Personal Genome Service’, 23andMe offers DNA genotyping based on a saliva sample that you provide.

Genotyping is not the same as sequencing.  Sequencing maps the entire DNA, a long and expensive process.  Genotyping, however, determines an individual’s genetic variants.  It is much faster (6-8 weeks), and much more affordable.

So, what exactly will you learn from 23andMe’s services?  Well, I was a little surprised (pleasantly) by the amount of information you will receive.  You will be informed of your risk for developing almost 200 diseases like Cancer, Aneurysms, and Parkinson’s.  And that list is still growing.  You will also be informed of your risk for passing on 24 inherited conditions to your children like Cystic Fibrosis, Sickle Cell Anemia, and Tay-Sach Disease.  23andMe will also inform you of your personal responses to 20 common drugs like Coumadin, Plavix and Oral Contraceptives, highlighting a possible need for a higher or lower dose than normal for effectiveness.  And, 23andMe also discusses 52 Traits such as Male Pattern Baldness, Menopause and Reading Ability, and how your genetics will influence them.

23andMe also covers Ancestry.  You will be notified of any genetic relatives among the 23andMe subscribers.  You will also be able to map the migration of your early ancestors and find their origins.

When I first learned about 23andMe, I got very excited.  Their service appealed to me on both levels: as an ET patient interested in the Health information and also as a genealogy lover and family tree tracer interested in the Ancestry offerings.  I looked into the service, and learned that the kit cost $199, plus a monthly subscription of $9 (with at least a 1 year commitment).  Without the subscription, the kit is $399.  For everything you get, no, that’s not a bad price.  But it was out of my range.  Then, recently, I learned that the price of the kit has been reduced to $99 (with membership commitment).  That’s quite a bit of savings!  Again, a great price considering all you get, but still beyond my price range.

Then, great news!  As I was lamenting to a friend (who also has ET) that I couldn’t spend that much on the kit, but really wanted to be able to do this, she pointed out 23andMe’s MPN Research Initiative.  In addition to submitting your sample for sequencing, there are 33 surveys that you can fill out that will help in the research of MPNs, and 23andMe also offers an MPN Community Forum.

And best of all?  23andMe is offering 1000 FREE KITS and FREE LIFETIME MEMBERSHIPS for MPN patients!!!  

A very nice woman who is on the research team at 23andMe recently joined our Facebook ET Support Group to talk to us about 23andMe and answer our questions and concerns.  She also mentioned that only about 400 kits for the MPN Research Initiative have been claimed, so there’s still one there for you :).

A few concerns were expressed in the support group.  I’d like to share them with you, along with Meghan’s responses:

Q:  Are there any type of risks by being a part of this Study?

A:  As with almost any research study, there are risks to participating. Luckily they are minimal for joining our project. The risks involve things that are always a concern with research studies, like the chance that your data could be stolen, or things like having someone hack into your 23andMe account. You can see a more comprehensive answer in our consent document at https://www.23andme.com/about/consent/ The relevant section is titled “Are there any risks to participating?”  We are very committed to protecting the privacy of all of our customers, whether they participate in research projects or not.

Q:  Does anyone worry about what happens once you get the results? I mean if you find out that you have an increased chance of breast cancer, will you then have a higher insurance rate or not be able to get insurance at all?

A:  The Genetic Information Nondiscrimination Act (GINA) protects Americans from discrimination (in health insurance and employment decisions) on the basis of genetic information. You can read more about how GINA protects your privacy here:https://www.23andme.com/you/faqwin/gina/.   If you have reservations about the disease risk aspect of our service, you can opt out of viewing the health information and it would not be uploaded to your account.

To order your MPN Research Initiative kit, fill out the form HERE.  I sent away for my kit 4 days ago and received it in the mail yesterday.  It took me 5 minutes to register my kit online and provide my sample.  It is back in the mail, today.  How easy is that?  As I mentioned, there are 33 surveys that you can fill out as part of the MPN Research Initiative.  Each survey seems to take between 5 and 15 minutes.  Yes, that will add up to quite a bit of time, but it’s not much considering that you will be aiding MPN research.  Plus, I look at the surveys as being my cost for that free kit and membership ;).  Each question does offer the option “I don’t know”, or “I’d rather not say”, so if a question makes you uncomfortable, you can opt out of answering it.  And, I can fill out the surveys while I wait for my results, since I am SO excited!

If you decide to take advantage of this wonderful offer, or if you have done so already and have your results, please let us know and tell us what you think.  I’d love to hear about your experience with 23andMe.  Did I mention how EXCITED I am? 😀

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~ by julie70 on December 2, 2011.

7 Responses to “23andMe MPN Research Initiative”

  1. Hi Julie, This does sound interesting. My husband had some genetic testing done just after his diagnosis – though nothing as extensive as you’ve described. His finding and risk factors were summarized in a letter that he could send out to our children and other blood relatives. A lot of the language is over my head, but we had one doctor who summarized it for us. I hope you’re able to get one of the kits.

    Are you going to the meeting Jan 15th in Okemos? I’m not scheduled to work that day, so will plan to go. I hope Brad is in town to go as well. I already marked it on his January calendar!

    ps: In case you haven’t noticed, I have de-activated my FB page. It was for work and security reasons. But I do check out the MPD discussions via my husband’s FB page.

    Good luck to you,
    Pat

    • Hi Pat 🙂
      You should sign hubby up for the kit. I did get mine, yesterday. The woman from 23andMe said there are still roughly 600 kits left, so your husband should have no problem getting one.
      I didn’t know about the support group meeting. They must have just decided on a date. I’d checked a couple weeks ago and there wasn’t a date, yet. As long as I have access to a reliable vehicle, I will be there. My truck can’t make the distance, anymore, but if I can get my hubby to take the day off work I can use the car.
      I hope to see you there, and hopefully I’ll finally get the chance to meet the mister 😀

  2. I have 2 family kits enrolled in the Parkinson’s research initiative, seemingly similar format to what you describe here. This is a great service to the research community and people affected.

    However, you may want to be informed about other practices at 23andMe. See these posts for more information.

    http://www.yourgeneticgenealogist.com/
    http://blog.eogn.com/eastmans_online_genealogy/2012/01/23andme-generates-controversy-with-new-subscription-policy.html

    This issue is showing up in many genealogy blogs as well as discover and forbes magazine blogs… even their own FB page and internal community forums.

    At the bottom of the matter is company ethics. We trust them with the most personal and precious of all possessions, our dna. “Bait and switch” is a term that is being used often to describe promising one product, taking the money, then changing the agreement without so much as notifying those impacted.

    All I am suggesting, is be informed, ask a lot of questions, do some reading and then after thinking it through, make the decision that is right for you or your loved one.

    I don’t regret signing up for the parkinson’s project. But I am not sure I am comfortable with what I have seen from the company in these last few months either.

    • I really appreciate this comment. Since posting this entry, similar concerns have been expressed in a Facebook ET group, about 23andMe. I will certainly check out the links you’ve listed, and I hope others will, too. You are right, it is very important to be informed. Thank you.

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