23andMe controversies in the genetic genealogy community

By Razib Khan | January 1, 2012 3:11 pm

A few readers have pointed me to controversies having to do with 23andMe’s “terms of use”. You can read about it over at Your Genetic Genealogist, who has two posts up on the issues. I think the crux is that the early enthusiasts for personal genomics in the genetic genealogy community can not support the revenue needs of a firm like 23andMe. The question for the firm is how to expand its reach more fully into the domain of personalized healthcare, where the big money and mainstream impact is, without alienating these early adopters, who are not bashful about spreading bad buzz all over the blogosphere.

 

From what I can tell there’s a lot of confusion as to what’s going on. Myself, I don’t care about the details too much. My main interest is getting the raw data, I don’t pay that much attention to the various health & genealogy services that 23andMe provides. But I can understand why others feel differently. I also know that 23andMe is not irrational, and is trying to run a firm which can generate a profit. They’re not a charity.

The key is how they can make the “person on the street” more interested.  I have purchased eight accounts in their system, most of them with the monthly personal genome service fees. It’s pretty clear that most of the people who I’ve purchased these accounts for don’t play close attention to the results. Yes, they were curious, but they haven’t kept up with the health report updates, or explored the other services. Obviously I’m going to cancel the subscriptions for that reason, as I’m not interested in paying for a service that’s not being utilized.

I wish 23andMe, and all the new personal genomics firms, the best of luck. This is a time of great change, and I think in 2020 this sort of service is going to be a seamless part of our lives. But working out the details isn’t always going to be without error (my own suggestion would be a reversion to more fine-grained service with the subscriptions). Life comes at you fast….

CATEGORIZED UNDER: Personal Genomics
MORE ABOUT: 23andMe
  • http://sep.stanford.edu/sep/jon/ Jon Claerbout

    I’m sorry to hear others have a problem with this, but it strikes me as a tempest in a teapot. Cheapest part of my health care budget. Sure beats medicare/caid taxes.

  • John

    I have it on good authority (i.e. first hand) that 23andMe are trying to sell their data to academics. I was told of a demand of 750k$ for the data set. However, they are shockingly greedy and not only wanted money but also control and ownership of all IP generated. Double dipping with problematic TOS.

  • A Family Genealogist

    The point is that the early adopters purchased the product under one set of rules with expectations spelled out by 23andMe… and that changed without notice or acknowledgement.

    Genealogists understand that whether it is a paper trail document or dna cousin being pursued, there is often a substantial waiting period until an actual discovery is made. Results are not likely to be immediate. Removing the ability to see matches after the one year subscription period (not new matches, but those accumulated during the year) cripples the potential of the tool and diminishes the value. It also reduces the usefulness of the database to other researchers as access to others tested drops off due to non-renewal. There is no recognition of the personal investment these family historians have made attempting to extend their trees and actually connect on paper. It is a very time-consuming, detail-oriented and personal hobby.

    Then, there is question about the secret family discounts that were “automatically” applied to applicable accounts. But the very secrecy of this program created a sense of exclusion. (No mention in Terms of Service, official publications, only informal forum discussions by customers) It seemed to be preferential in a way that some could take advantage of, but others not in the know, with just as many kits, paid full price. Even worse, purchases were made with the understanding that this discount would be applied. Instead, 23 chose to end the program unannounced. Kits in the system were discounted, but new kits – Surprise!! – were not.

    There are a lot of growing pains at 23andMe. Genealogy and health concerns are very different critters with entirely distinct needs from personal dna testing. Perhaps it’s decision time. There are other reputable companies who cater specifically to genetic genealogy… without mining the data from their customers to peddle to the highest bidder.

  • http://bluetenlese.wordpress.com M. Möhling

    @A Family Genealogist

    > There are other reputable companies
    Could you name some?

  • MMaddi

    @M. Mohling,

    >> There are other reputable companies
    >Could you name some?

    The main competitor to 23andMe in autosomal SNP testing for genealogy purposes is Family Tree DNA. They introduced the Family Finder test in 2010, so their database is smaller than that of 23andMe. This test uses the same basic Illumina testing chip as 23andMe currently uses.

    However, FTDNA’s customer base is entirely made up of people interested in genetic genealogy. Also, they are expected to accept uploads of 23andMe v3 raw data into their database soon for a reasonable fee. Any genetic genealogist who is dissatisfied with 23andMe’s TOS change and is not renewing their subscription there will probably upload their 23andMe raw data into the Family Finder database.

    If you’re one of the dissatisfied 23andMe v3 customers who doesn’t intend to renew your subscription after one year, you’d be well-advised to download your raw data and Relative Finder and Ancestry Finder lists before the subscription expires, when you will lose access to all that data. Then you could upload your raw data into FTDNA’s database when that option begins.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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