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Action needed in advance

So those of us who tested on 23andMe before the whole kerfluffle with the FDA and access to health reports are finally seeing some action in transitioning our accounts over to the new 23andMe reporting system.

The Legal Genealogist finally got the email yesterday saying my own account will be one of the ones shifted over to the new system “by the end of August.”

Gee… and it only took three years…

23.emailThis all began, you may recall, back in 2013 when 23andMe somehow managed not to fully cooperate with the FDA in getting approval for its health reports, after itself initiating the process to seek FDA approval.1 By the time the dust settled, 23andMe had had no choice but to suspend its health testing,2 leaving the genealogy part intact… but going nowhere.

It took 23andMe another two years — until late 2015 — to clear up its disagreements with the FDA and relaunch a very-much-modified version of its health testing system,3 all the while leaving the genealogical testers pretty much floundering on their own. And that sense of floundering wasn’t eased when, in November 2015, 23andMe put a big purple notice on all the old test kits results that said some key features (like the ability to send messages to those who’d chosen to test anonymously) were being disabled.4

In the months since that big warning sign went up on older accounts, those of us who tested on the old system have been wondering just what was going to happen — and just how useful 23andMe would be for genealogical research once the transition was complete. Now, it seems, we’re about to find out.

First, as far as the health-related information is concerned, we’re told that what 23andMe is going to do is archive our old health-related information in a PDF report. It’ll send us that report (or at least a link to that report) and that’s the only place that information is going to be available. And it’s only going to be available if we take some action in advance.

And, the email says, there are a couple of things we all need to do before that change-over occurs:

1. We need to answer some questions on our ethnicity — whether our ancestry is European or African, for example. That information is going to be permanently archived in a report and we won’t be able to change it after the archive is created.

2. We need to look at the existing health reports and see whether any of them are locked reports. Those who tested under the old system were analyzed for risks of things like Parkinson’s Disease or Alzheimer’s and the results are considered sensitive — meaning they’re things we may not really want to know. So we’re given the option: to look at that specific report, or to leave it locked. These locked reports are not available under the new system (since they don’t have FDA approval) so this is a now-or-never choice. If we don’t unlock it before our accounts are transitioned, we’ll never see the results.

3. We need to decide whether we want the health results at all. As 23andMe puts it: “Your opt in or out status for health results. If your profile settings are set to ‘waive access to health results’ when the Reports Archive is generated, you will not receive an archive.”5

The emails have an action date — mine was 9 June 2016 — and a clickable link to the kit profile to make the needed changes, and of course anybody who tested under the old system who’s changed email addresses needs to log in to 23andMe and bring things up to date.

Second, once these older accounts finally are transitioned, we’ll be able to see firsthand how much genealogical utility remains in the 23andMe system. It’s clear that some features useful to genealogists are going to be lost completely — Countries of Ancestry, for example, and the ability to see fully-identical regions (areas inherited identically from both parents, so the individuals are full siblings) versus half-identical regions (segments inherited from only one parent, which could reveal a half-sibling relationship). And, of course, the price tag — ouch. It’s a lot more expensive now at $199 so getting new matches may not be so easy.

But there are also aspects of the new system that look promising: there’s a new in-common-with reporting system that looks like it could be very useful, for example.6

So if you, like me, tested before November 2013 on 23andMe, go ahead and take action on the ethnicity and health reports part — and then we can all mark our calendars to see just what happens “by the end of August.”


SOURCES

  1. See Judy G. Russell, “Fooling with FDA,” The Legal Genealogist, posted 26 Nov 2013 (http://www.legalgenealogist.com/blog : accessed 28 May 2016).
  2. Ibid., “23andMe suspends health tests,” The Legal Genealogist, posted 6 Dec 2013.
  3. Ibid., “The changes at 23andMe,” The Legal Genealogist, posted 25 Oct 2015.
  4. Ibid., “Now… and not now,” The Legal Genealogist, posted 6 Dec 2015.
  5. I was genotyped on the v3 chip, what do I need to know about transitioning to the new 23andMe?,” 23andMe Customer Care (https://customercare.23andme.com/ : accessed 28 May 2016).
  6. See Kitty Cooper, “A Triangulation Feature on the New 23andme,” Kitty Cooper’s Blog, posted 6 May 2016 (http://blog.kittycooper.com/ : accessed 28 May 2016).
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