Thursday, 17 June 2010

Going Private

Today I am in possession of a promotion code to order a free DNA testing kit from the Icelandic company deCODEme. Six kits are being given out by the Association of British Science Writers for the “Future of Genomics” strand of their forthcoming London conference.

I choose the cancer screen, clicking past the $500 price tag. Ordering is easier than Amazon – no family trees or consent forms. Given the recent sample mix up at rivals 23andMe I wonder if I will be asked any questions (such as gender) to enable a simple cross-check, but the online form is minimal.

I tick the “sign your life away” boxes and open the Service Agreement (which I normally ignore). It includes the confirmation that the sample is mine or belongs to someone who has agreed to have it taken, plus a few interesting bits:

“Users’ Settings, public or private, will be used by deCODE to gather statistical aggregate information about the users...such analysis may include, but is not limited to...associating genetic variants with any of the self reported user attributes.”In other words, I am providing data to help deCODE’s research projects.

“You acknowledge your understanding of genetic risk as a statistical measure that has implications derived from a large group of people with characteristics equivalent to yours but does not determine your chances for getting the corresponding disease, the disease severity, or the disease outcome.”I’m hoping this will be pointed out again further down the line, in a place where it is actually likely to be read.

“The Genetic Scan product is for informational purposes only, is not medical advice, and is not a substitute for professional medical advice, genetic counseling, diagnosis, or treatment.”It’s a fine line....

I click through to the final page. DeCODE has been slowly sliding down into the commercial cesspit of precariously regulated direct-to-consumer genomic testing companies, and with Iceland’s economy as turbulent as their volcanoes I wonder if I will hear anything back.

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