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The First Personal Genomic Sequencing Test Offered for $985

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Today, deCODE genetics announced the launch of their consumer genotyping service, deCODEme. deCODEme is the first personal genomics company to launch, and will provide sequencing information about 1 million SNPs for the introductory price of $985. The service has two components:

1. The genotyping of ~1 million SNPs (single nucleotide polymorphisms, or personal differences in the genetic code), and;

2. A secured website for presenting the data obtained from the sequencing.

The official press release from the parent company deCODE genetics, contains some interesting information about the product:

“Through your subscription to deCODEme, you can learn what your DNA says about your ancestry, your body –traits such as hair and eye color– as well as whether you may have genetic variants that have been associated with higher or lower than average risk of a range of common diseases. This information will be continually updated as new discoveries are made.

“Subscribers will create a secure password-controlled personal account. Just a few weeks after sending in a simple cheek swab, customers will receive expert analysis of more than a million key variants across their genome, accessible through an easy-to-use and intuitive user interface.”

What Does This Mean for Genetic Genealogists?

The SNP chip used by deCODEme – human1M – tests 40,097 loci on the X chromosome, 2,283 on the Y chromosome (if there is one!), and 163 mitochondrial SNPs. The information gleaned from the deCODEme sequencing can be translated into ancestral information. From Nicholas Wade’s New York Times article “Company Offers Genome Assessment“:

“Besides information about disease risk and normal physiology, Decode will also examine the Y chromosome and mitochondrial DNA, the only two elements of the genome that are always passed down essentially unchanged from one generation to the next. SNPs on the Y chromosome reflect the origin of a man’s ancestors back to 50,000 years ago when modern humans first left their ancestral homeland in northeast Africa. Those on the mitochondrial DNA reflect the wanderings of women throughout the globe.”

The deCODEme ancestry page states the following:

“Your DNA has been passed between generations for hundreds of centuries. deCODEme allows you to virtually reconstruct the geographical distribution of your ancestors back hundreds and even thousands of generations. Through an intuitive interface you will be able to view how your mother and father and their ancestors contributed to your genome and how much of your genome is derived from people from Africa, Europe or Asia. We offer a clear and concise analysis of this information with user-friendly explanations and graphics.”

SEQanswers, who has registered for an account and provided a length, information-packed review post, provides the analysis options available on a post-registration landing page:

“These options are “my GENE profile”, “my PHYSICAL attributes”, “my ANCESTRY”, and “COMPAREme”.”

Thus, it appears that deCODEme is planning to translate the results of their genotyping into a easy-to-use format for anyone interested in their genetic genealogy, under “myANCESTRY.”

The Ethical Concerns Associated With Genomic Sequencing

The problem, of course, is that genetic sequencing has the potential to raise numerous ethical concerns. The New York Times article presented the following quote:

“If people can go into this testing knowing what its limits are, and can take it with a grain of salt, that’s fine,” said Angela Trepanier, incoming president of the National Society of Genetic Counselors. “But you have to be really careful about what you know and don’t know.”

deCODE is also careful to state that the assessment should not replace proper medical care:

“Dr. Kari Stefansson, chief executive of Decode Genetics, said the genotyping information his company would provide was not the same as a genetic test. If customers felt they were at particular risk of a disease, they should get a proper test from their physician, he said.”

Also, some State laws prevent elements of the deCODEme process. After registering, the applicant must testify that:

“I am not a citizen of any of the following states: Arizona, California, Connecticut, Georgia, Maryland, Michigan, New Jersey, New York, Rhode Island, and Wyoming.  As a resident of any of the above states, you will not be allowed to use the deCODEme.com genetic risk calculations part of this website, as mentioned in the Genetic Scan customer agreement.”

This could create a problem for people who live in these states and wish to purchase this product.

As with any product that can reveal medically-relevant information, there are also privacy concerns. The deCODEme website does has a lengthy privacy page which addresses some of these concerns.

For More Information:

A webcast of the announcement is available at deCODE’s website. I would recommend spending a few minutes to watch it. In addition to providing useful information, it showed numerous shots of beautiful Iceland.

GenomeWeb Daily News has a story entitled “Decode Throws Hat into Consumer Genomics Ring.”

Forbes has an article at “Personal Genome Race Goes Into Overdrive.”

There’s already a lengthy discussion at RootsWeb’s GENEALOGY-DNA mailing list.

The Wall Street Journal has a blog post at “Decode Me? Personal DNA Sleuthing on a Q-tip.”

Blaine Bettinger

Intellectual property attorney, genealogist, and author of The Genetic Genealogist since 2007