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It was almost a perfect genetic testing storm.
- Approval of an article I co-authored with Dr. Shane Green (Ontario Genomics Institute) for the American Medical Association online Journal of Ethics, the Virtual Mentor
- A media release about a a new collaboration between Medcan and Navigenics.
- A note forwarded to me to add a genetic counsellor to the mailing list for our GE3LS Digest.
My old journalistic senses saw an opportunity in there and today I found myself in the MedCan clinic in Toronto talking to genetic counsellor Jill Davies.
Three weeks ago Medcan started offering the Navigenics direct-to-consumer test coupled with a family history and a follow-up once the results are in. This is a significant option in the world of DTC testing not easily coupled with the services from the other major players. If you order the test directly from Navigenics you also get access to counsellors, but in a clinical setting the options to really expand and act on the relevant information become much greater.
According to Jill Davies only about 20% of those direct to Navigenics customers actually take the opportunity to follow up with the company and I found that somewhat surprising. The results from a DTC genetic test are not easy to fully understand and consumers shouldn't think
otherwise. While these early adopters of the testing have embraced social media in a big way that is not a comparable option to a one-on-one discussion with someone who analyzes test results for a living. Sure you can Google something like SNP rs1799853 but that doesn't mean you'll find reliable explanations written for a lay audience that will explain your own risk.
Jill also showed me a sample of the physician's report Navigenics offers to customers.The report provides the basic information, skips the health and environmental suggestions, and includes citations your doctor can follow up with. It also included a pretty bold type warning to 'Not chart this information'. Why? So your insurance company can't access the information.
After the tour of the facilities, a discussion of the process and sample reports, and the required paperwork, it was time to spit. Like 23andMe , Navigenics uses the Oragene spit kit and like the last time it wasn't easy to work up enough saliva to fill the tube. Jill said her experience is that men have an easier time filling the tube than women and there appears to be some differences based on ancestry as well.
I should add that because of my work with Genome Alberta this was a complimentary test and the initial follow-up will be included as it would for any other user. Anything after that however will be up to me. Genome Alberta is not involved in any partnership with DTC genetic testing companies and we don't engage in any testing of our own so there is no conflict of interest. This is all about providing objective information to consumers and we hope to some researchers.
The results will be in very close to the September dates for our Age of Personalized Genomics Conference in Banff, Alberta and Jill is attending so we'll do the consultation there to save some travel expenses. Genome Alberta's Translating Science/GE3LS project is organizing the conference and we're helping with sponsorship so I'm going to suggest to the agenda committee that we do the follow-up as part of one of the sessions.
What a better way to bring together researchers who are often well removed from seeing exactly how their work impacts the public.
Either way though, I'll be sharing the information as I have the other test results at www.genomealberta.ca/PersonalGenotyping