Friday, August 24, 2012

Follow Up: Lab Error Responsible for Adoptee's Confusing Match at AncestryDNA

This morning I received a call from John Pereira, VP of Business Development at Ancestry.com, to discuss my post regarding the recent issue involving the confusion surrounding the adoptee's parent/child DNA match. He informed me that it was caused by a lab error. He declined to tell me the exact nature of the error and, of course, couldn't discuss "Chris and Pat's" specific case with me, but emphasized that it wasn't a problem with AncestryDNA's algorithms or underlying science. He shared with me that the error affected a small number of people and AncestryDNA is doing all they can to remedy the situation, including implementing new policies to ensure this doesn't happen again. Those affected are being retested with fresh samples as an extra precaution. Without addressing any specific customer(s), he explained that those affected were "matched to some people who they shouldn't have been". He assured me that they were rushing out new kits (this was confirmed by the adoptee in my post, "Chris") and would process them as quickly as possible as soon as the new samples are returned. He couldn't give an exact time frame, but assured me that it would not take nearly as long as had been earlier quoted to "Chris" by Ancestry.com's representative.

In this case, it doesn't sound like having access to the underlying genetic data would have completely solved the problem since it would also have been incorrect. However, I still stand by my opinion that, with it, this situation would have been much more easily resolved. (In fact, a good example of this was the 2010 sample mix-up that affected 23andMe customers. Thanks to our active community and 23andMe's data transparency, the problem was quickly discovered and rectified.) Upon seeing an inheritance pattern that was clearly parent/child and reviewing the details of the corresponding match, it would have been undeniable in my mind that there was a lab error since these two people absolutely could not have shared that relationship. We wouldn't have wasted any time trying to fit a square peg into a round hole or on a "wild goose chase" as one of those affected termed it. There would have been no hours spent researching, speculating or, most likely, even blogging about it.

Let's face it, lab errors do occasionally happen. It is just very unfortunate for everyone involved that one of the small number of people affected was an adoptee and that an immediate family member prediction was the result of this error. It is heart wrenching to witness someone who has been denied their right to know "who they are" go through this experience on top of everything else they have been forced to endure in their search for their biological roots. By definition, we as genealogists understand the value of learning about our heritage and our ancestors. As a result, I cannot apologize for my passionate response to this situation. As a blogger, while striving to be unbiased about the various DNA testing companies, I do write from my own perspective. As an active participant in the genetic genealogy and adoptionDNA communities, I am not a completely detached observer. I have strong opinions and, sometimes, I unequivocally share them.

As I told John, I believe it would go a long way in easing their customers' minds if AncestryDNA were to release a statement that explained specifically what went wrong. "Lab error" is a bit wide in scope and when someone is handling our genetic data, we want details. On that note, it won't come as a surprise to my readers that I re-emphasized to John the importance to the genetic genealogy community that AncestryDNA release our genetic data to us. I mentioned that my colleagues and I were happy to discover that Ken Chahine's statements to the Presidential Commission for the Study of Bioethical Issues in Washington D.C. on August 1st were in line with our belief that our genetic data belongs to us (video and transcript).  During the second session, Dr. Chahine stated that "the customer retains ownership of their DNA and data". However, we feel that AncestryDNA's policies do not currently reflect this. John reiterated what I have been told before, which is that they are genuinely considering the best way to deliver this data to us. In response to my persistence, John told me that they are aware that this is important to me, but that they have to take into consideration everyone's feedback, not just mine. As a result, giving us access to our genetic data is not at the top of their list of priorities. He explained that they read lots of feedback and do a significant number of surveys and focus groups in order to determine what is most important to their customers and, by that process, their priorities are dictated. The problem with that is that the vast majority of those people will be new to DNA and a person just venturing into the world of genetic genealogy doesn't even know what they should be asking for. I appreciate that AncestryDNA's goal is to reach well beyond our community (as it should be and is in our best interest), but if these customers are engaged by their results and want to know more, where do they go? I can tell you one thing they do, they write to me and/or join our community's mailing lists and forums and ask questions. In my experience, these people who wish to explore genetic genealogy further, without exception, are disappointed when they realize what they have been denied. So, all of you out there who care about this issue need to make your voices heard. Let them know it isn't just me.

For all of you who have commented here, sent me emails and weighed in on mailing lists and forums, thank you! I am so sorry that I have not been able to respond to each of you, but I am reading them and John confirmed that AncestryDNA is too (except my email, of course!). My inbox is overflowing, but I do want you to know that I appreciate your sharing your thoughts, ideas and opinions and will try to respond to you all as soon as possible. I will also keep everyone updated on the outcome of the situation regarding "Chris and Pat" as privacy permits. Let's keep our fingers crossed for them.

*Update - 23andMe finds no match for "Chris and Pat".

39 comments:

  1. Great follow-up post CeCe! Please let us know if there's a specific e-mail address or submit form at Ancestry.com to write to requesting this.
    Thanks!

    ReplyDelete
    Replies
    1. Katherine,
      If a person has purchased one of the new atDNA tests (only through invite), there is a feedback button on the upper right hand side of their DNA home page. I'm not sure if there is another way to submit feedback to them, but I will post it if I find one.
      Thanks for the support!
      CeCe

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  2. CeCe,

    I hope AncestryDNA listens to your great advice. I agree with your statement "Let's face it, lab errors do occasionally happen." What is important is that AncestryDNA learn from this mistake and put procedures into place to minimize the chance of this error happening again.

    Frankly, I am more concerned that AncestryDNA doesn't realize how important access to the matching segment data is for customers as those customers learn how to use their results to find cousins and to trace their ancestry. AncestryDNA may have many more disappointed customers when those customers understand the importance of not having access to the underlying data. Ancestry stumbled once before in the genetic genealogy market. It can't afford to stumble again by underestimating the importance to customers of access to the data used to do the matching and to predict their biogeographic ancestry.

    Thanks for all you do for the genetic genealogy community and for trying to help all of the companies to be successful.

    Regards,

    Larry

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    Replies
    1. Hi Larry,
      Thank you for your very intelligent perspective and for recognizing that I do want all of the companies to be successful in this market. Competition breeds better offerings for all of us.
      I completely agree that even if Ancestry's customers don't realize it yet, as they get deeper into their DNA genealogy research, they will realize what they are missing.
      CeCe

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  3. For those reading this thread, don't forget all the other adoptees who still must go through even more hoops to have the same right you and I take for granted in knowing the names of their ancestorsy. So contact your State representatives and ask them why Adoptees need to go through these hoops to find their birth ancestors in the first place. While this one incident is heart wrenching, there are hundreds of thousands of people out there trying to find their birth parents. Many don't know yet about DNA but are simply trying through Google and hoping for that lucky break.

    Here is a good site that goes over a lot of this information:
    http://www.declassifiedadoptee.com/2010/04/amandas-guide-to-introducingdefending.html

    ReplyDelete
    Replies
    1. Hi Rob,
      As you know, I never forget about the plight of adoptees. Frankly, it is deplorable.
      Well said, and thanks for the reminder as to why these tests are so important for adoptees in the first place.
      CeCe

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  4. Dear CeCe,
    Thanks for writing this post and providing a summary of John Pereira's comments. It is quite disappointing that John said that Ancestry.com does not believe it is a priority for Ancestry.com to give the DNA results to Ancestry.com customers who have done the AncestryDNA autosomal DNA test. Perhaps Ancestry.com customers who have done their autosomal test should formally write to Ancestry.com and request their raw data file. If the raw data file is not forthcoming then I would suggest that it would be appropriate for Ancestry.com customers to contact the Commission for the Study of Bioethical Issues in Washington D.C. and point out to the commission that Ancestry.com is not following the policies that Ken Chahine says that Ancestry.com has in place regarding allowing customers access to their actual DNA results. I am sure that many Ancestry.com customers would like to have access to their raw data files.
    Sincerely,
    Tim Janzen MD

    ReplyDelete
    Replies
    1. Tim,

      I agree with you, that you and other DTC Genetic Genealogy Consumers with concerns in this area should ramp up the level of concern and complaints by: (1)directly contacting the Commission Members at info@bioethics.gov; (2)cc the Whitehouse at comments@whitehouse.gov; (3) locate and cc email their elected representatives in D.C. at http://www.house.gov/representatives/find/ ; (4) start an online petition; (5) contact the Board of Directors at Ancestry.com

      I viewed the 8/1/12 the video presentation by Ken Chahine http://www.tvworldwide.com/events/bioethics/120801/globe_show/default_go_archive.cfm?gsid=2090&type=flv&test=0&live=0

      At about 33 minutes ... he shows his true colors and is afraid of people (like you!) who may upload their Raw DNA Data to unregulated sites such as GedMatch.com. Plus in an early part he clearly says things about "medical uses" of AncestryDNA data which is aggregated.

      So, in regards to AncestryDNA .... ISOGG and the Genetic Genealogy community are "far" behind the curve in getting AncestryDNA more consumer friendly, properly regulated, and insuring basic Consumer safeguards when dealing with 3rd parties such as GedMatch.com; SNPedia; etc.

      George Jones

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    2. @George,

      Received this update for the address to whitehouse.gov:

      Dear Friend,

      Thank you for your message. On behalf of President Obama, we appreciate hearing from you. The President has promised the most transparent administration in history, and we are committed to listening to and responding to you.

      In order to better handle the millions of electronic messages we are receiving and respond more quickly, we have implemented a new contact form on our website:

      http://www.whitehouse.gov/contact/

      Please note that this web form has replaced comments@whitehouse.gov. That email address is no longer monitored, so we encourage you to resubmit your message through the link above. Thank you for using the web form and helping us improve communications with you.

      Sincerely,

      The Presidential Correspondence Team

      Delete
    3. Tim, George and CA Funshine - I obviously agree with your feelings on this subject, but I worry that contacting governmental agencies and commissions will cause unwanted regulation to our beloved genetic genealogy tests and restrict our progress toward our shared goals. I would rather approach Ancestry.com directly in our efforts.
      Thanks for your comments,
      CeCe

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  5. I agree that "lab error" is only a marginally better explanation than "we're still in beta tseting". A lot of people are paying for this service, and they are all being denied access to their raw DNA data - a policy I am completely at odds with. The only reason I'm still going through with having my wife take the AncestryDNA test is I still have some hope that Ancestry will down the road figure out that giving all its customers access to their own DNA is the right thing to do.

    ReplyDelete
    Replies
    1. I have the same hope, ironhide781. Thanks for your comment.

      Delete
  6. Thank you for all your advocacy efforts and for keeping us informed of the facts CeCe!

    If I ever get my invite from AncestryDNA as promised, I will be sure to lobby them for my personal raw data. :)

    When I hear stories like this it helps me to justify testing at more than one company. I have tested my mtDNA and atDNA at FTDNA and the fact that my mtDNA haplogroup was the same at 23andMe and I have common FF/RF matches reassures me that the correct raw data has been assigned to my account.

    ReplyDelete
    Replies
    1. Hi Helen,
      Yes, it is nice to have the opportunity to confirm results and analysis elsewhere. That is a cornerstone of science and something that we should feel comfortable requiring from the companies that we as genetic genealogists do business with.
      Thanks!

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  7. review

    Edit
    Debbie Kennett said...
    CeCe

    Thank you for keeping us all informed on these issues. Lab errors can happen at any company but it is how the company deals with the errors that is important. The other companies have learnt from their mistakes. Let's hope that Ancestry can do the same. It must be heartbreaking for the people in this particular case to go through such an emotional rollercoaster. I hope they get some answers soon.

    I agree with Tim Janzen that the bigger issue with Ancestry at present is that they won't allow customers access to their own genetic data. In order to get your DNA tested with Ancestry you have to agree to this clause in their Terms and Conditions:

    "By submitting DNA to AncestryDNA, you grant AncestryDNA a transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered."

    While Ancestry require you to sublicence your DNA to them in order to take their test they do not grant their customers the same right to have access to their own DNA. Also, the tests are quite meaningless if we cannot see the underlying genetic data so that we know how many segments and SNPs we share in common with our matches. If Ancestry won't provide the information customers should at least have the data so that they can upload it to third-party sites.

    I'm also concerned at the way that Ancestry have obscured the consent process for their "Human Genetic Diversity Project" as part of the activation process for the DNA test.

    I've blogged about my experiences with the Ancestry DNA test here:

    http://cruwys.blogspot.co.uk/2012/08/my-ancestry-autosomal-dna-test-part-i.html

    http://cruwys.blogspot.co.uk/2012/08/my-ancestry-autosomal-dna-test-part-2.html

    ReplyDelete
    Replies
    1. Thank you Debbie for your intelligent coverage of these issues.

      Delete
  8. I appreciate the follow up as well as your passionate defense of the right of customers to their own raw data. My feedback has been submitted directly to ancestry (reference number is #120825-001162).

    Although I am not expecting a personal response from Ancestry, my hope is to add yet another voice to the growing list in support of release of data.

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  9. A agree with everything you have written, CeCe. Ancestry's response appears to imply that, although you would like raw data to be released to customers, most others would prefer it to be withheld. The idea that anyone would actually prefer not to be shown the data that they own is manifestly absurd. It doesn't make sense.

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    Replies
    1. Thanks Andrew. I think what John was saying (and Ken in earlier conversations) is not so much that others want their data withheld, but that they have other things they want more. I feel that these others don't really know what to ask for because they don't have the experience that those of us who have been working at this for years do. Hopefully, Ancestry will realize how important these aspects of their offering really are.
      CeCe

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  10. I have been watching ancestry dabble with selling dna tests for about 10 years. Each time before (3, if my memory serves correctly) they sold tests and then provided little or no support to their customers before quietly folding the effort.

    Their current effort offers an intriguing possibility by tying autosomal block dna results to posted pedigrees and then advising the tester of dna and paper trail identified relationships - a much better starting point than testers have had elsewhere.

    However, the early stages of this latest effort - with unethical handling of their "research project" opt-in, their refusal to provide the underlying data to the customer - and now "lab error" implies that they are no more serious about their customers this time than in earlier efforts.

    I hope this time that ancestry will either get serious about actually serving their customers (instead of simply selling tests) or will quickly fold before they do more harm to genetic genealogy.

    Terry

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    Replies
    1. Hi Terry,
      I know that many share your concerns.
      You are clearly correct that Ancestry has, by far, the best foundation and system to streamline the process of atDNA matching. Let's hope they can take their efforts one step farther.
      Thanks for sharing your perspective as someone who has been involved in genetic genealogy for a very long time.
      CeCe

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  11. Just a response to "John's" comment on using surveys and focus groups of ALL customers to guide his development priorities.

    Doing it as he stated is likely to result in a 'least common denominator' kind of product. This approach will produce a product that appeals to the newest customers, but sadly disappoints those who have some experience in the area.

    A better approach is to keep doiing the surveys, etc. and understand that what you offer must appeal to those people, BUT recognise that there is a small subset of their customers with more experience who can tell Ancestry.com a lot about where today's newest customers will be in a few months or years. By identifying these subsets of users, Ancestry's products can be much better targetted as the market grows. The company that does this most effectively will slowly dominate the companies who take the "least common denominator" approach.

    There is much in the marketing literature about doing this, but John seems unaware or perhaps just covering his a$$ in his comments to you.

    Enjoy

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    Replies
    1. Hi Hugh,
      I agree with you your comments.
      Thanks!
      CeCe

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  12. Stuff like this definitely concerns me. I'm the administrator for my grandfather's test on ancesty.com. He was adopted and we have no idea who any of his biological relatives may be. Thankfully based on the matches (all 4th cousin and beyond) he's getting so far, the test seems to be accurate - based on where and when he was born we have a pretty good idea about his ethnic heritage, and he is matching with people who mostly also have that heritage. Hopefully Ancestry will release the raw data to its customers. I would love some way to be able to transfer his data to the other companies, as we cannot afford to test through them. He was adopted from an orphanage in Quebec in the early '40s - need I say more. :-\

    ReplyDelete
    Replies
    1. Hi Alison,
      It would be great if you could participate in Gedmatch.com, but you're right, until Ancestry provides raw data there is no way to do so. I think we are already corresponding, but if I am mistaken, please send me an email so I can see if I can give you a referral to a great Search Angel who may be able to help with your dad's case.
      CeCe

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  13. (I have received quite a few complaints about being unable to post comments, so I am posting one from Richard Hill for him...Thanks, Richard!)

    CeCe, you did a wonderful job of informing your readers about this situation. I have not yet recommended AncestryDNA to my readers for the same reasons raised here by you and others--especially the lack of customer access to raw data. Thanks for this and for all the unheralded work you do behind the scenes for adoptees.

    Richard Hill
    www.DNA-Testing-Adviser.com

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  14. Best I can tell, CeCe's position makes good sense.

    ReplyDelete
  15. Thank you for keeping us informed, CeCe. Until Ancestry decides to release our results to us, I will not be testing with them. Unfortunately, our surname DNA project was started in 2000 through Relative Genetics, which Ancestry took over a few years ago. I have been very unhappy with the way they have presented our results on their website. Not nearly as helpful as Relative Genetics.

    ReplyDelete
    Replies
    1. Hi Debbie,
      That is really too bad about your surname project. Maybe you should consider moving the project to World Families (.net). They mostly work with FTDNA, but will include results from other labs.
      CeCe

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  16. Dear Cece,

    AncestryDNA fairly deserves this criticism.
    The industry standard has been set by FTDNA, 23andme and the National Geographic Genographic project.

    AncestryDNA is at this point no more than a "wanna be."
    Their argument for not releasing the raw data is weak.

    Thanks for being an advocate for us.

    A.J.

    ReplyDelete
    Replies
    1. Thanks for the comment A.J.. I hate to criticize any of the companies who are trying to advance genetic genealogy, especially since I don't want to discourage people to test, however quality and transparency are very important.
      CeCe

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  17. Ancestry made me wait several weeks just to order a kit and then took many more weeks to process it compared to my experience with 23andme. As for value, I have gotten, IMO, much more out of my 23andme investment so far. Dr. Edward D. Rockstein

    ReplyDelete
  18. I just purchased FTM and posted private tree. I also have atDNA in process at Ancestry. Much to my surprise, I found my cousin's YDNA results on my webpage at Ancestry. These tests were ordered by me in 3/12 through FTDNA. The results are downloaded on my computer +I posted them on Y-search. How did Ancestry get them?
    BAndrews

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    Replies
    1. I have no idea, Barbara! That is very strange. I have recently been hearing that those who purchased a test through GeneTree or participated in SMGF's research have results showing up in their Ancestry accounts, however, I can't imagine how a test purchased through FTDNA would appear there. I can guarantee that FTDNA is not sharing data with Ancestry.

      Delete
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