International MPN News, Science & Opinion

Spit? Maybe..but Wait a Bit

Today, 23andMe, a Mountain View, California company, announced it will be collecting DNA samples from MPN patients to establish a large scale genomic database.
The stated aim in creating this large genotyped MPN cohort is to facilitate research into causes and cures of MPNs.

Participants in the project will be asked to provide a DNA sample and complete survey information on personal characteristics, disease states, and other as yet unspecified areas.

Beyond the opportunity to contribute to this large scale research resource, participants will receive a personal genomic report supposedly ranking their relative risk of acquiring various diseases. They will also have access to historical data tracing their family origins through their DNA.
MPNforum has interviewed scientists and consultants both within and outside 23andMe and researched the risks and rewards of participating in the program.
Our review and analysis with be published August 15, at http://www.mpnforum.com.

Comments on: "23andMe launches MPN research tool" (7)

  1. oops! forgot me info.
    I too am cautiously pessimistic and at the same time very curious

    Kay 53 dx PV 10, just about to have my first phleb in over a year. Baby asa.

  2. jsandresen1 said:

    Heather you hit it on the head. This company is in the for profit business. They are counting on creating a data base of DNA from MPN patients they can sell for profit. We are but the gateway. They want to be DNA brokers for profit. I will not turn my DNA over to them when I can donate to Stanford for free and help others while protecting my data. Plus their scan of your DNA is so small it’s like taking a picture of you from the moon.

  3. Larry Puckett said:

    Is this still open? I would like to participate in this. How or who is to be contacted?

    Larry P (64)
    dx ET (87) , Pv (11) Jack2+

  4. Heather M said:

    Will be interested in the results of your due diligence as i would be very wary of a commercial company promising ‘research’ whereas in fact it might just be an elusive carrot to get you to pay a subscription. Or am i just too cyncial?

  5. Birgitta Alexius said:

    Very interesting! I would like to know if I have the TET2 mutation. Unfortunately I can’t participate since I don’t live in the US but in Sweden.
    Kind regards
    Birgitta-A
    72 yo, dx MF 2006, Thalidomide + Prednisone since June 2010 with positive result

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