23andMe to Get a Makeover After Agreement with FDA

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:

FDA 23andMe 1FDA 23andMe 2

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.

FDA 23andMe New Experience

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.

FDA 23andMe New Reports

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.

24 thoughts on “23andMe to Get a Makeover After Agreement with FDA

  1. As soon as 23andMe switched to My Heritage for the ancestry tree to be used for 23andMe participants I knew it was just a money game. Also, I manage two accounts on 23andMe, but am allowed only one ancestry tree. I am constantly asked to upgrade to a paid subscription for My Heritage.

  2. This is right in line with 23andMe switching to My Heritage for ancestry trees and allowing only one tree per account even if you manage multiple accounts. Money seems to be the bottom line for this company.

  3. I just visited 23andme.com to discover the price of a test has doubled ($199) and they are advertising that “We are the first and only genetic service available directly to you that includes reports that meet FDA standards.” So, they apparently intend to offer “Health Reports” starting today (10/21/2015). I submitted a $99 Autosomal test kit last week and will be curious to see if the results include a Health Report, though I purchased the test prior to the FDA approval.

    • You’ll get a test result, although perhaps maybe not as fast as people who ordered kits starting today. It’s just too bad we didn’t know about this in advance, I’d have gladly ordered five or so kits and put them on my credit card to use as I find people who are close to me, who I’d like tested.

      But, there’s still AncestryDNA and FTDNA out there for a hundred bucks if I want to confirm very close matches (I’m adopted).

  4. It remains to be seen if 23andMe is the preferred choice for people who want to use their DNA to find out about themselves. I figure that with the price jump, there will be a marketing push, and only a lucky few will find out about AncestryDNA’s frequent sales, and the ability to get a medical report from Promethease for a mere pittance. If they do a marketing effort on the level of Ancestry.com, they will indeed be able to increase their database of genomes, no matter the doubling of price. Frankly, $200 for a medical test that’s not covered by insurance is peanuts these days.

    As far as 23andMe using my information to create new drugs to cure diseases, and not giving them away for free, I say, more power to them. My adoptive father suffered from Parkinson’s before he succumbed to liver cancer, if they can produce anything that cures or effectively treats either one, it will be a boon to humankind.

  5. On balance, I see this as good news for genetic genealogists. There’s a very clear network effect for all of us: more people = better results. Maybe now the results will all be on the same site. Despite all its flaws – OK – despite its one huge flaw, Ancestry has some really good tools including family trees. 23andMe gave me a lot of solid matches, few of whom knew anything about their family.

    Both Ancestry and 23andMe are backed by private equity / VC investors who want a return on their money, so naturally they will be profit-oriented. I happen to think 23andMe just deprived themselves of a huge number of kits for research, but time will tell.

  6. I am aghast but not surprised that 23andme has done this price change with no advance warning. This is the perfect way to alienate current and future customers. They should have announced a price change and given the genealogical community some time for “last chance” before the price hike. The cost is already prohibitive for some. Or perhaps they could have raised the price to $139 or $149. The holidays are around the corner and I have heard many people say they planned to order a kit for a spouse or other family member. 23andme has disappointed me once again. 23andme no longer has my consent for scientific research. I went into my account settings and changed it to:

    You HAVE NOT GIVEN CONSENT to participate in 23andMe scientific research. This means that any survey answers you provide cannot be included in peer-reviewed published research articles. Note that 23andMe may still use the information for internal purposes.

  7. Very disappointed that 23andme have raised their price to $199 for international (non US based) customers if we will still not get the health reports. I was about to buy a kit as a gift for my dad who lives in New Zealand but why should I pay double what I would have paid yesterday, the same price a USA based user who willl now also get health reports now pays, if my dad will still get ancestry reports only? The whole situation is ridiculous as there was never any reason why non US users shouldn’t have continued to get health reports anyway as the FDA doesn’t have any jurisdiction over non-US citizens resident in countries aeound the world – the FDA only has jurisdiction in the USA. Which is a very small percentage of 23andme’s potential customer base of billions of middle class consumers worldwide. Why would 23andme discriminate against its non-US customers? Without non-US people there would be no basis for genetic genealogy in the first place. If international clients are to be excluded from the new health reports now the FDA has given the go ahead it would be disappointing to see such America-centrism from a company that is so well placed to embrace a global outlook. Hope their management can try to break free of their conditioning as there is a big wide world out there and the USA is only a relatively small percentage of it. People worldwide would pay extra for health reports but many international customers will baulk at paying $199 if they will receive less value from their tests (“Ancestry only.”)

  8. I originally paid $297 for my test at 23andMe, so I don’t think the price hike will be much of an issue for those wanting comparisons to the largest atDNA database on the planet, however, I do think it will create a slowdown for testing there…I too think it was pretty crappy to just throw a double in price out there with no advance warning and would have also liked to purchase a handful of kits at $99 for relatives who will test for me and have no interest in the health informaiton, in deed, most ask it to not be included as they don’t want to know at all.
    On the up side, I was worried the tools that make 23andMe the only site you can do full analysis for genetic genealogy might disappear so I was glad to see these two videos showing those features will still be there and likely be easier for newbies to find/use! 🙂

    And https://www.youtube.com/watch?v=pon3zOxMH8M are very helpful and encouraging. The My Heritage trees — I agree with every negative comment about that–indeed they totally SUCK and are NOT genetic genealogy friendly as you have to not only go through the request to view process for trees in addition to sharing but the format for the trees is the ABSOLUTE WORST out there!! Who can dig through a tree TWO GENERATIONS at a time! Totally useless!
    I’m crossing my fingers and waiting to see what happens.

  9. If I were starting today with what I know now, I’d only test at Ancestry.com and transfer to FTDNA and GEDMATCH. 

    When I started, 23andme was the only autosomal test out there. There r some old timers who still prefer 23andme, because that’s where they manage several test from when 23 was the only company. They put a lot of time and money into 23 and promote 23 so their matches will increase. 

    Don’t be left in the past. Test with anyone, but 23andme. 

  10. Roberta,

    Some of us are willing to provide our genetic material and answer their serveys just in the hope that new information will be discovered, even if they do profit from it, mankind may be helped. The profit potential often drives research faster than non profit efforts are capable of.

    Dale Wallace
    Olympia, WA

    • That’s fine, but when people pay for a service, and the same price for that service as others are providing without the mandatory DNA research inclusion – it’s not right. People should be able to opt out of research entirely. I don’t think people understand their DNA is being used one way or another, no matter what they do.

  11. hi

    I still do not know what happens to the V3 tested people that at the time had the medical part included.
    There will be no medical upgrade , so what upgrade is there for V3 ??

    regards

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