Monday, 7 May 2007

Should you take a free DNA genealogy test?

A free DNA test is being offered by the Sorenson Molecular Genealogy Foundation (SMGF) at this year's Ontario Genealogical Society Seminar in Ottawa. You can also participate at any time by sending for a sampling kit; the only cost is mailing the sample back. SMGF collect the DNA sample using a mouthwash swill technique, require you to submit your four generation pedigree including birth dates and locations, and sign a consent form. You get nothing directly back in return, but eventually part of your DNA data, and genealogy data more than 100 years old, will appear in their public databases for you to find. Their practice is to not release your name, although the sample is identified by surname.

It sounds good, and they deliver as you can see from the data presented on their web site. The Y-Chromosome database includes more than 17,645 men with more than 7 markers; the mitrochrondrial database has 19,543 sequences.

According to the site's FAQ "Sorenson Molecular Genealogy Foundation is a non-profit foundation that is creating the world's leading collection of DNA results and corresponding genealogies. We are making the collection available on-line to the public to help in finding new family connections and extending one's genealogy. SMGF is not affiliated with any other commercial organizations, religious institutions, or other DNA testing projects."

The Foundation is State of Utah Business Entity number 4898157-0140, registered on 12 March 2001 as a non-profit corporation currently in good standing, officially described as in the business of information services. An expired registration for a company by the same name, at the same address, listed it as a religious organization.

SMGF is shown under the umbrella of the Sorenson Companies, along with Relative Genetics, a commercial DNA testing company. People who provide a sample to SMGF are eligible to receive a coupon for a test with Relative Genetics at a discount rate. Lab testing for both SMGF and Relative Genetics is conducted by another Sorenson Company, Sorenson Genomics. In my view these relationships call into question the FAQ statement that "SMGF is not affiliated with any other commercial organizations, religious institutions, or other DNA testing projects."

Folks wanting to take advantage of the test should be aware of the following:

The requirement to provide a four generation pedigree, including the donor providing the DNA sample, leaves one open to release of personal information which could be highly sensitive. The tests undertaken include not only those for the Y-chromosome and mitrochrondrial DNA but also autosomal DNA. Analysis of autosomal DNA can reveal the values for the CODIS markers used for forensic and criminal investigation purposes, and also information related to health vulnerabilities that could potentially impact on the ability of the donor, or relatives, to obtain medical insurance coverage.

According to the SMGF Privacy Policy:
"we make all reasonable efforts to protect the privacy of contributors"
"we will never share your genetic information with any outside companies. Your name will never be listed in our on-line pedigree charts. We will never list the names and genealogical information of any of your ancestors born after 1906 in our on-line pedigree charts."

Nevertheless, we are all aware that mistakes happen. Computers with personal data are occasionally lost or stolen and network security breached. The consent form you MUST sign in agreeing to participate in the SMGF project includes amongst the warnings under the heading "Risks, Inconvenience, and Discomfort":

"It is possible that the confidentiality of your records could be compromised. There are risks associated with a loss of confidentiality of your genealogical information and genetic testing results. Information about genetic test results may affect your employment, insurance, or family relationships. The sponsor cannot be certain that your genetic test results could never be linked to you."

In the State of Utah there is a process to convert from a non-profit to profit motivated corporation. Without any requirement to consult the donor, the information supplied could be used for private profit if such conversion was made. Furthermore, in the unlikely event that SMGF should run into financial difficulty, assets could be sold and it is unclear whether that might lead to the undertakings of confidentiality being compromised.

While there is no indication that SMGF and its sponsors have intentions that are anything other than honourable, potential donors would be wise to weight the risks and benefits in advance -- before having to do so while at the company booth at the OGS conference.

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