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How to donate 23andme exome pilot data

August 25, 2012

Many thanks to the PGP participants who have already donated exome data! We are working to feature these and other donated data on our site.

Customers using 23andme’s pilot exome service may have recently received an email from 23andme notifying them that online hosting of their exome data will end soon (at the end of August). Before this occurs, we would like to communicate to our participants how they can donate this data, if they wish to do so.

It is ideal to have the full data set donated (BAM data as well as the VCF file). These files are large and difficult to upload. We believe the easiest method for participants to donate this data is to provide the Personal Genome Project with the information needed for download (as given to you by 23andme):
(1) the Amazon Web Services URL
(looks like: https://exome-export.s3.amazonaws.com/AB1234_C56DE78a9b.tc)
(2) the decryption password
(looks like a random string, e.g. “XahN7tah4s”)

With this information we can download the data directly and decrypt it. An email from you containing this information will be treated as a “public donation of data” to the PGP and may be made public immediately. (Making the BAM data public may take some time though. You can check the status of things by seeing what is visible on your public profile.)

To email us, please log in to your participant account on my.personalgenomes.org and click the “Contact Us” button. By receiving the information through your participant account, we can confirm that the donation was personally made by the participant.

Please let us know if you would rather share the data with us in some other manner. Thanks again to all our participants!

4 Comments
  1. August 30, 2012 6:37 pm

    Hi

    I’ve emailed you my exome password. My membership hasn’t come through yet, so please can you download it quick as it will be deleted tomorrow! (Yikes)
    I’m non-US, so there’s some extra faffing to deal with, I’m afraid….
    Please assume I’ve read and agreed to various kinds of boring things, as may be necessary.

    Thanks

    A

    • August 31, 2012 10:01 am

      Hi Andrew,

      I’m not sure how you emailed it, I don’t think we’ve received anything and I don’t see any user account in your name. We’ve received the information you sent, but we can’t accept this donation if you aren’t a participant. For now, I’d recommend downloading it and saving it yourself, since we won’t be able to save the data for you.

      You mention non-US, so I should also note: the PGP is currently only able to accept participants who are US citizens or permanent residents. This is due to legal issues. Many places (including the EU) are enacting legislation regulating genetic data (e.g. http://www.genomicslawreport.com/index.php/2012/02/06/big-changes-coming-in-eu-privacy-law/). We aren’t prepared to handle the multitude of legal issues for the PGP in other countries, it’s difficult enough to keep up with changes within the US alone.

  2. Wendy Murphy permalink
    August 25, 2012 5:59 pm

    I’m all for sharing my 23&me info if I can but I am on vacation until sept 1 when I get back to my regular computer and can carry out the instructions. Is ther some way I can send you key info and you can do the hard part? I,m not even sure if I have the exome data you want. I bought the basic package some months ago and they sent back my mitochondrial profile. I have also provided as much general medical history as asked for. Let me know, please.

    Sent from my iPad

    Wendy Murphy

    • August 26, 2012 12:53 pm

      Hi Wendy,

      I think you probably don’t have the type of data I’ve described here. This isn’t the standard 23andme product (which is genotyping data and includes the mitochondrial analysis), the exomes are a special pilot 23andme has offered costing $1,000.

      Thank you for the donated medical information! We’re working hard to standardize various donated data. Medical information is extremely valuable but also difficult to collect in a standard manner, and so we hope to improve the interfaces for this in the future.

      We also greatly appreciate donated data from standard 23andme genotyping, which it sounds like you have. We’re working to improve instructions on the site to facilitate such donations.

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