ADVICE re. FDA's 15-DAY LETTER TO 23andMe
- On 22 November 2013, the US Food and Drug Administration (FDA) issued a 15-day "cease and desist" letter to 23andMe (see Here for the actual letter and blog posting FDA Orders 23andMe to Discontinue Testing – there are multiple other postings too).
- Although FDA doesn't give two hoots about genetic genealogy data, their issue is with the health information that 23andMe provides "because it is intended for use in the diagnosis of disease or other conditions or in the cure, mitigation, treatment, or prevention of disease".
- Advice is provided here for some recommended steps to take in the event that access to any of your on-line data at 23andMe is removed, so that you still have what is important to you – and some information is provided for those who are "Newbies".
- To be totally up-front, I am only really interested in the genealogy aspects of 23andMe and making contact with my DNA Matches, or at least providing them with my e-mail address (see Contact Information) so they have the option to make contact with me in the future – but I am also including some advice on non-genealogy things (e.g., the health aspects), as I realize that many of people have been tested at 23andMe with totally different objectives from mine.
- If you are one of my 23andMe DNA matches, I'm offering to help you download, obtain, and/or transfer your DNA data, even if you aren't yet comfortable in accepting a sharing request from me – note that "sharing genomes" is a really poor term for 23andMe to use, as all that happens is that they show a few DNA segments where our DNA matches (that is, show us where our DNA is the same).
- I'm trying to prepare a quick webpage here as time may be short, but I'll try and expand on things (and provide screen shots) if I receive feedback that more information on a particular topic would be helpful (Contact Me).
- I really hope that everything will be resolved quickly between 23andMe and the FDA, such that this webpage becomes unnecessary and I can delete it.
- UPDATE from 23andMe: see my latest Blog Posting (7 Dec 2013) – even though 23andMe has taken some initial steps (you may have received an e-mail from 23andMe) and it looks as though ancestry/genealogy details are not in jeopardy at the moment, we don't know if FDA will find the measures acceptable, so they may mandate something else. Anyone ordering the test after 22 November 2013 will not be given any health information, but those who have already received their health information still have access to it.
- The QUALITY of your DNA analysis by 23andMe is NOT under question – genetic genealogists are comfortable that your DNA results are still legitimate for ancestry and genealogy purposes. 23andMe is not being closed down, despite what some news reports may have indicated.
- I wrote the majority of this page before the most recent update from 23andMe on 5 December 2013, when it was very uncertain what would be happening in the short-term.
To All My DNA Matches
- If you would like any assistance with any of this, I'm happy to help you – so feel free to Contact Me (or via the 23andMe messaging system – click Sue's Profile Page, then at the top right, click on Send a Message). Please mention that you are one of my DNA matches on 23andMe and let me know your name (and "alias", if you use one) and what you would like help with or where you are stuck. We may not have much time (see dates in red above).
- Please Contact Me (or via the 23andMe messaging system – click Sue's Profile Page, then at the top right, click on Send a Message) and let me know your e-mail address – I may have also sent you a message with a different e-mail address (either is fine). If 23andMe changes their website in response to the FDA letter, there are concerns that maybe you won't have a means to make contact anyone (including your DNA matches) via the website, so we may lose promising genetic genealogy opportunities.
- Let me know your GEDmatch kit number if you have one – see #1. below. Mine are:
– FB4496 and
I have 2 kits on GEDmatch because of being tested by 2 companies
- Don't worry if you don't know anything much about your ancestors, but do let me know if you think any of them could be from England, Wales, Scotland, or the Isle of Man (the more specific the location the better). If you have a family tree on-line (even if it's only small), it would be helpful to let me know the URL – it's very difficult to look at the trees on 23andMe, and often to find where 2 trees intersect and how you may be related to someone else, you need to look beyond the ancestors (grandparents, great-grandparents, 2nd great grandparents, etc.) and look at your ancestors' siblings, cousins, and all their descendants. If you subscribe to Ancestry.com, you can see my Pedigree Chart at http://trees.ancestry.com/tree/19191953/family?cfpid=768348195 – see also Abbreviated Pedigree Chart and Ancestor Locations (links within this website), which anyone can access.
- I especially hope the "Anonymous" people on 23andMe (you will see a lot of these people in your list of matches, where all you know is "Male" or "Female", as they have not made their name or even their alias public) and some of the people who haven't previously responded to messages or "sharing" requests will now be encouraged to do so! I think a lot of the problem is that everyone receives their results, and then most people don't have much idea what they should do next.
- Even if months (or years!) have gone by before you discover a message from me in your 23andMe Inbox with the link to this webpage, I'd still like to hear from you.
The Most Important Thing: Download Your Raw DNA Data File from 23andMe
- I can't stress this enough. Whether you are primarily interested in the genealogy aspects or the health aspects of 23andMe, you absolutely MUST download your raw DNA data. Click Download Raw DNA Data for the 23andMe link to do this.
- On the Download Raw DNA Data page, you have 3 options (right at the bottom of the page): Mitochondrial DNA, Y-Chromosome, and All DNA. Select "All DNA" – and that will also include mitochondrial DNA and Y-chromosome DNA. If you use a Mac (Apple) computer, Read This, or you might have problems with the file unzipping itself without you doing anything, and that causes problems with GEDmatch uploads (see below).
- If you are going to upload your data to GEDmatch.com (see #1. below), DON'T unzip or try to even open or look at the zip file, or you may have issues – but once you've uploaded to GEDmatch, feel free to take a look at the ~960,000 rows of data!
Contacting Your DNA Matches and Accepting Sharing Requests
- 23andMe has an information page on Sending and Accepting Introductions.
- The only way to contact your DNA matches (for either genealogy or health purposes) is via the 23andMe website, so contact all your DNA matches (they will be listed Here), or at least those you have interest in being in contact with, and give them your e-mail address – and ask for theirs. And encourage them to download their raw data (see above). [Feel free to give them the URL for this webpage, http://www.genealogyjunkie.net/urgent-advice-re-fdas-15-day-letter-to-23andme.html, for additional information.]
- Resend messages to matches who haven't previously responded to sharing requests, in the hope that they will respond now with a nudge. If you have already invited someone to "share genomes" and they haven't accepted, you will have to first un-invite them, then if at least 30 days have elapsed since your initial contact, you can re-invite them. You can invite someone up to 3 times, before 23andMe prevents you from doing so again.
Copy Your Messages
- Copy and save 23andMe messages that you have exchanged with matches. I plan to just copy and paste mine into a Word file.
For the Genealogists/Genetic Genealogists
If you are a beginner, IGNORE this and go to the sections on "Newbies" below.
- GEDmatch.com is a wonderful, FREE website, with an excellent reputation in the genetic genealogy community, where you can upload your DNA data (once you've downloaded it from 23andMe, as indicated above) and see other matches. It has some sophisticated matching and comparing tools not available elsewhere. See HERE for details and screenshots for how to upload your data. [If you have problems uploading your file and you've saved it in a folder that is part of many subfolders, move it somewhere with a less complicated folder structure (this was a problem for me until I did this) – I would just save in My Documents or on your Desktop, and you can move it within a sub-folder later.] As mentioned above, your matches will only see the particular segments where your DNA matches (they won't have access to your full DNA results). You have the option to use an alias on GEDmatch.com or to not make your e-mail address public, but I encourage everyone to make their e-mail public (most people do) – you can always set up a free Gmail, Yahoo, etc. e-mail account with non-identifying information if you have concerns either about your e-mail address revealing your name or are concerned with spammers or the like (in which case you have not compromised your main e-mail address and can just close the e-mail account down).
- If you have spent time adding surnames, locations, and other information to your Profile page, you may want to copy and paste this to a Word or text document.
- Contact all your DNA matches as soon as possible (see above).
- Download all your Family Inheritance Advanced, Relative Finder and Ancestry Finder data from 23andMe via the free website DNAgedcom.com (yes, the names of all these 3rd party tools are confusing – this is different from GEDmatch.com!!). You have to provide your log-in information for each of these sites, but the information is not stored – it is used only to provide your downloaded information.
- If you were tested on the version 3 chip (sold between November 2010 to about November 2013), consider a "transfer" (actually duplication of your results) of your 23andMe data to FamilyTreeDNA (FTDNA), which allows you to fish in another pond for matches – it is free to try (and see your top 20 matches, with some limited functionality) and for full access only costs $39 (previously it was $69), but if you refer 4 other people (even if they don't subsequently pay anything) it is FREE – to do this, click Here (and for more information and a link to help someone else unlock their full results for free, as well as a chance to unlock your own for free, see FREE, yes FREE Autosomal DNA Transfer to FTDNA). It's not possible to transfer Y-DNA or mtDNA results from 23andMe.
- Consider searching profiles for specific surnames and locations on 23andMe using Profile Smartsearch.
- If you have accepted invitations to "share genomes" (as explained above, this is a very poor term, as all that happens is that they show us the DNA segments where our DNA is the same) and have wondered what the more experienced look for on 23andMe, check out Family Inheritance: Advanced. Try putting your own profile on the left and any one or more of your matches on the right (or vice versa), then press Compare to see:
– Which chromosome(s) you share DNA on
– How many DNA segments you share
– The total "length" of DNA (shown as cM) that you share
- For each colored segment, hover over with your cursor to see:
– The start and stop positions on the chromosome for the shared DNA segment (they are the long numbers with a lot of zeros)
– The "length" of each (shown as cM) and how many "SNPs" they contain
- The longer the DNA segment you share with someone, and/or the number of DNA segments, and/or the longer the total cM (with sufficient "SNPs") the more likely you are to be related and the closer the relationship is likely to be
- There are a lot of really helpful people in the genetic genealogy community who will give you great advice and help at no charge (even those who aren't potentially related to you). Yes, it's all a bit overwhelming initially, but dip your toe into the water and start to give it a try!
This is kind of interesting, and especially to those who are adopted, those with possible immigrant ancestors (to the US or elsewhere), those with African-American, Native American, Ashkenazi Jewish ancestors, etc.
- Do screen-shots, copy, or print off anything of interest in Ancestry Composition. Explore all the pull-down and other menus (which aren't immediately obvious):
– Standard, Conservative, and Speculative (at the top in the middle)
– Map view, Split View, Chromosome View (at the top left)
– The "+" and "-" for Global Resolution, Regional, and Sub-Regional (almost at the top, in the middle)
- If you are interested in the health aspects, go to Health Overview and copy or print off all your information – or go separately to Health Risks, Drug Response, Inherited Conditions, Traits, and Health Tools. If there are any particular items of interest to you, click on the link and copy or print off the information.
Preparing for the Unknown
- At the moment, it's rather like preparing for a potential earthquake or hurricane – but it's better for all of this be unnecessary, rather than looking back and regretting you didn't take some preparatory steps.
IMAGE DETAILS (DNA Double Helix): This work has been released into the public domain by its author, Apers0n at the English Wikipedia project. This applies worldwide. This image is in the public domain because it contains materials that originally came from the National Institutes of Health.
Page updated 18 October 2013