25 August 2012

The Informed DNA Tester

Disclaimer: The following represents my opinions. I've spoken and written little publicly about the issue of Ancestry.com not providing raw DNA data to their genetic genealogy customers, here, in several posts on mail lists, in DNA presentations, and in private messages. I try to be fair when stating my objections to policies and actions of a company whose product I use every day. I don't use their DNA products or put family trees on their site. I make extensive use of their databases and record images. I analyze DNA data from Ancestry for clients and family members and compare it to the results from other companies when enough information is provided to allow this. I pay standard subscription rates for all services from Ancestry. I do not receive free access or services from them or from any other DNA company.

I believe it is important to test with a company that gives you full access to your DNA data. The graphical tools provided by the testing companies allow only the most superficial analysis of the data. The raw DNA data can be used in many utilities and by knowledgeable genetic genealogists to help you learn more about your family history. Isn't that the main reason you took the DNA test?

Ancestry.com, under the name AncestryDNA, offers genetic genealogy tests. Even though their policy states you own your data, they do not provide the raw data results to you. Having access to the raw data is important, not only because it is your data and you can learn more by analyzing the raw data. When an error occurs, as is possible in any human endeavor, the error can be caught quickly when we see the actual data. When all we see is a graphical representation of that data, as interpreted by a proprietary algorithm, it is difficult to determine the cause of an unexpected result. The genetic genealogy community has helped quickly resolve problems in the past by analyzing the raw DNA data and seeing illogical results.

In my opinion, every customer of Ancestry should demand the raw DNA data be made available to them. For details of a specific problem that brings this point home, see these blog posts:
CeCe Moore, "AncestryDNA: Confusing Relationship Predictions and Adoptees," Your Genetic Genealogist blog, posted 21 August 2012 (http://www.yourgeneticgenealogist.com/2012/08/ancestrydna-confusing-relationship.html : accessed 21 August 2012).

CeCe Moore, "Follow Up: Lab Error Responsible for Adoptee's Confusing Match at AncestryDNA," Your Genetic Genealogist blog, posted 24 August 2012 (http://www.yourgeneticgenealogist.com/2012/08/follow-up-on-ancestrydna-and-adoptees.html : accessed 24 August 2012).
Be sure to scroll down and read Tim Jantzen's comment about contacting the Commission for the Study of Bioethical Issues if Ancestry refuses to provide your raw data to you. Debbie Kennett's comment and the link below to her blog raise a separate issue.

Emily Aulicino, "Autosomal Testing: Genetic Genealogy's Current Buzz-Word," dna - genealem's genetic genealogy blog, posted 24 August 2012 (http://genealem-geneticgenealogy.blogspot.com/2012/08/autosomal-testing-genetic-genealogys.html : accessed 24 August 2012).

If Ancestry does not make the raw data available I will not recommend them to my friends, colleagues, or clients. I now feel justified in making this statement publicly. Ancestry does a lot of good by providing indexes and images to genealogical researchers. I believe their policy is wrong in their handling of DNA testing and results. Ancestry may choose to continue their current policies. Many in the genetic genealogy community think that is not a wise decision and will hinder growth of our knowledge of human genetics as relates to family history research.

In addition to the problem of not providing raw DNA data to the person tested, Ancestry does not indicate on the first page of the activation form that one of the check boxes gives permission to participate in an optional research program. Every customer should carefully read both the "Consent Agreement" and the "Terms and Conditions" before checking the boxes. I feel sorry for customers who do not take the time to perform this important action and blindly agree to something they may not want.

You are required to agree to the "Terms and Conditions" to activate the DNA test. If you agree to the "Consent Agreement," as is your choice, you are granting broad rights allowing Ancestry to
perform genetic tests on the DNA using test methods available now and developed in the future
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.1

Even though some of this is standard legalese here in the U.S., it seems pretty far reaching where DNA is concerned. We are still learning about DNA; giving this much control to a public corporation is something to consider carefully before agreeing. Check out these blogs for more information from those who have tested at Ancestry. For now, I prefer to spend my money at companies that understand the results of a DNA test belong to me, including the raw DNA data.
Roberta Estes, "Ancestry’s Consent Form for AncestryDNA Autosomal Test," DNAeXplained blog, posted 16 August 2012 (http://dna-explained.com/2012/08/16/ancestrys-consent-form-for-ancestrydna-autosomal-test/ : accessed 18 August 2012).

Debbie Kennett, "My Ancestry autosomal DNA test Part I: Consent forms and admixture analyses," Cruwys news blog, posted 21 August 2012 (http://cruwys.blogspot.co.uk/2012/08/my-ancestry-autosomal-dna-test-part-i.html : accessed 22 August 2012).

Debbie Kennett, "My Ancestry autosomal DNA test Part 2: The matching process," Cruwys news blog, posted 22 August 2012 (http://cruwys.blogspot.co.uk/2012/08/my-ancestry-autosomal-dna-test-part-2.html : accessed 22 August 2012).

1. AncestryDNA, "Information and Consent Form," (http://dna.ancestry.com/legal/consentAgreement.aspx : accessed 25 August 2012).

To cite this blog post:
Debbie Parker Wayne, "The Informed DNA Tester," Deb's Delvings Blog, posted 25 August 2012 (http://debsdelvings.blogspot.com/ : accessed [date]). Or you can link to the individual post.

© 2012, Debbie Parker Wayne, CG, All Rights Reserved

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