By 23andMe Director Esther Dyson

One of 23andMe’s goals is to help people understand how their own genetics influences who they are – what they look like, the diseases they’re prone to, maybe even how they behave.

The problem is, right now most of that is just unknown. Though the genetic data in your 23andMe account is accurate to well beyond 99.9 percent, research simply hasn’t revealed yet what much of that information means. Even less of what’s been discovered has been clinically validated, which is why we stress that 23andMe information should not be used as a diagnosis.

To learn more, researchers need to collect thousands of genetic profiles – and the health data connected with each of them – to find correlations between the two. That leads to a second goal of 23andMe – to collect a large database of genetic information and then come back to you over time with invitations to provide specific health data and participate in research.

We’re not asking you to do this for purely altruistic reasons - either on our part or on yours. We’re a profit-seeking company, even though our founders and employees – and directors! – all share the vision of better understanding of everyone’s genomic make-up. As for you, the research results your data help produce could translate directly into benefits for you, or at least for your children, grandchildren and friends.

A case in point is my brother George. He recently sent me an email after undergoing colorectal cancer screening and feeling frustrated about how little information it provided.

After a colonoscopy last week, I’m strongly in favor of anything that might give a more fine-grained prediction on how often I should get tested (and what insurance will pay for) besides the current crude differentiation into “2-year,” “5-year” and “10-year” risk groups.

As the family genomics coach, I wrote back:

Hi George –

You may be hoping for too much right now. According to 23andMe, based on the SNPs for which they have published research, my risk for colon cancer is about 2 percent. In fact, I know it to be about 95 percent: I had a pre-cancerous lesion removed three years ago. If I don’t keep getting colon growths removed and die of something else first, I will probably die of colon cancer. I just hope… not too soon! ….
In fact, the 23andMe information simply means that there’s insufficient data on the genomes of people with colon cancer. 23andMe relies on published research, and there isn’t much out there, so they currently show a correlation to only one genetic marker (and even it appears to have been studied only in Europeans!) but there are probably ten or more involved with colon cancer. [Note: The other thing for him to keep in mind is that the genetics of colorectal cancer – its heritability – only partly contributes to whether or not he'll get it. His environment is estimated to play a greater role.]
So right now, [my father] and I are more likely to be contributors to the research than beneficiaries. Maybe our genomes, if we contribute them to some future 23andMe study along with our health data, will add to the data that helps us find those other variations that together would be a better predictor.

As for you, I hope you stay ‘clean’ and that your genes can contribute to the disease-free control group. But keep taking those tests! When’s your next one? Are you 2-year, 5-year or 10-year?

PS to you Spittoon readers: I look forward to posting again as I find out more about myself and
my 30 (yes!) family members, including identical twins.

Esther Dyson is an active investor and board member in many start-ups, including 23andMe.

Tags: 23andMe, cancer, colorectal cancer, Esther Dyson

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