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23andMe to Get a Makeover After Agreement with FDA

Roberta Estes

Today’s e-mail contained a message from 23andMe announcing that they have obtained partial FDA approval.  Not approval to continue what they were doing, apparently, but approval to provide some carrier status (for 36 genetic disorders), wellness and trait reports to participants.  Here’s the e-mail:

You can read their new privacy statement here and new terms of service here.

This new functionality, replacing the old and current functionality requires a web site redesign.  Now, given that the genetic genealogy community has been begging for some functional changes for years now, this could be the silver lining to the cloud.

Sure enough, when I signed in, it says a new experience is coming.  I hope they have taken the many suggestions provided by the genetic genealogy community to heart when doing the redesign.

Here’s a link to the FAQ.

Not everything currently available will be included in the new version.  For a comprehensive list, check here.

If you tested before the FDA shutdown in December of 2013, which happened just about concurrently with the release of their V4 chip, although the two events were unrelated, you may not qualify for all of the new reports.  It appears that you may need to upgrade to the new V4 chip platform.  23andMe states that US customers won’t have to pay anything extra for the new reports, but they don’t say that upgrading to the V4 chip would be free.  They also don’t address international customers.  I’ll guess we’ll find out.

Now for the bad news, at least for people who have been using 23andMe for family type autosomal projects.  The price of testing increased, not just a little either – but doubled.  It was $99 and it’s now $199, as of today.  The good news – Family Tree DNA and Ancestry are still $99.  A fine way for 23andMe to thank the genetic genealogy community that kept them afloat in the nearly two years since the FDA shut down their medical and health reporting.

I think, in terms of genealogists and genealogy testing, they just shot themselves in the foot.

A Bloomberg Business article here discusses more about the new offering, including the following statement:

“The revamped test also will feed data into 23andMe’s new drug-discovery unit, led by Genentech Inc. veteran Richard Scheller. Along with gathering genetic information, 23andMe also surveys its customers on their physical traits and symptoms. By developing this unique database, the company hopes to gain a better understanding of how genes drive disease, leading to new drug targets. Out of 1 million customers, more than 80 percent have consented to participate in research, 23andMe has said.”

Clearly, the real 23andMe interest is not and has never been in genetic genealogy, but in gathering the DNA of participants to sell and utilize to design and discover drugs that are assuredly, not going to be available for free or discounted prices to those genetic genealogists who agreed to provide their DNA and other information “for research purposes.”  I have to wonder how many people realize that’s what they have done and that’s what they are doing every time they answer one of the front and center surveys on the 23andMe site.

For a long time, I think people who tested at 23andMe thought of “medical research” as the type of research involved with the Michael J. Fox Foundation which is nonprofit.  In fact, 23andMe is affiliated with this organization and has published articles including Michael in 2012.  Given that, I was uncomfortable when 23andMe patented a gene having to do with Parkinson’s Disease.

However, subsequent articles that announced that 23andMe had patented the technology for designer babies made it abundantly clear, at least to me, that the 23andMe medical interest was not altruistic as I had once believed.

You can opt out of their research, at least partially.  Your genetic information is still used in an anonymized aggregated fashion.  There is no complete opt-out, as best I could tell in either the old or new terms of service and privacy policy.

In any event, change is afoot and we’ll see the new version of the 23andMe website by the end of the year, according to Anne Wojcicki’s e-mail announcement.  Let’s hope that there is an improved genealogy matching experience.  Let’s also hope they make it unmistakably clear to customers, both old and new, that they are going to use their genetic information for high-stakes profit-making ventures and give us a way to opt out of the research aspect entirely without being penalized.

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