Matthew Holt

23andme gets unwanted publicity

Sergey Brin, Google co-founder and husband of 23andme co-founder Anne Wojcicki, has announced that he has the gene for Parkinson’s disease and that his mother carries it to. She already has the disease, as did her aunt. Sergey has written about this on his new blog Too and it was picked up by the NY Times. Unlike the issues around Steve Jobs and his cancer, there’ll be no impact on Google’s business. If—and it’s only an “if”—Brin develops Parkinson’s it’ll be many many years from now. However, Parkinson’s is a very serious condition which people are right to dread—the father of one of my best friends has it, and his life is extremely grim.

Coincidentally I was doing my “spit” for 23andme just a few minutes ago when this story went on the NY Times site. So I can’t tell you about my results from them yet. I have though had my genome sequenced by Navigenics. Thus far none of the results have been compelling enough to make me actually do anything.

That of course is also Brin’s problem. At the moment there’s nothing he can actually do. In Genomics diagnosis is now running far far ahead of capacity for treatment.

But the hope of services like 23andme, Navigenics, DeCodeMe, and others aimed at promoting cures and treatments like CollabRx and Cure Together, is that the body of knowledge from both genomics and overall patient experiences will advance fast enough that the current situation of “more diagnosis with less ability to change the outcome” will slowly change to one where knowing your likely health future will help you avert some of the worse consequences.

Let’s hope so for Sergey’s sake and all of ours.

UPDATE: Just to clarify the headline, I don’t mean that 23andme does not warrant or deserve this publicity, or that they have done anything at all bad here. When I say "unwanted" I mean they are getting publicity for their service because of a situation that no one would want to happen to them (or to Sergey Brin). But of course that’s true for many many great health care services of all stripes.

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11 replies »

  1. I am in field of genetyping and I know what are the limitations of a service like 23andme is providing. Using genotyping, sometimes we do not get information SNP which are very close to each other. Also there are other factors like copy number variations and chromosome folding which can affect the results dramatically. I would say it would take another 3-5 years more to have a reliable prediction from SNPs. For now I would suggest to go for family and questionnaire based prediction. One company http://www.myfamilyhealth.com provides such service that is more useful than 23andme service. Also It provides genotype based prediction if you already have your genotype.

  2. I am in field of genetyping and I know what are the limitations of a service like 23andme is providing. Using genotyping, sometimes we do not get information SNP which are very close to each other. Also there are other factors like copy number variations and chromosome folding which can affect the results dramatically. I would say it would take another 3-5 years more to have a reliable prediction from SNPs. For now I would suggest to go for family and questionnaire based prediction. One company http://www.myfamilyhealth.com provides such service that is more useful than 23andme service. Also It provides genotype based prediction if you already have your genotype.

  3. I am in field of genetyping and I know what are the limitations of a service like 23andme is providing. Using genotyping, sometimes we do not get information SNP which are very close to each other. Also there are other factors like copy number variations and chromosome folding which can affect the results dramatically. I would say it would take another 3-5 years more to have a reliable prediction from SNPs. For now I would suggest to go for family and questionnaire based prediction. One company http://www.myfamilyhealth.com provides such service that is more useful than 23andme service. Also It provides genotype based prediction if you already have your genotype.

  4. I am in field of genetyping and I know what are the limitations of a service like 23andme is providing. Using genotyping, sometimes we do not get information SNP which are very close to each other. Also there are other factors like copy number variations and chromosome folding which can affect the results dramatically. I would say it would take another 3-5 years more to have a reliable prediction from SNPs. For now I would suggest to go for family and questionnaire based prediction. One company http://www.myfamilyhealth.com provides such service that is more useful than 23andme service. Also It provides genotype based prediction if you already have your genotype.

  5. SNPs are a great place to start in the personal genomics space, but we’re eager to keep moving to new forms of genetic data as they’re adopted by the research community. Next gen sequencing looks very promising and will eventually be a data platform we offer to our customers, when the cost-benefit analysis warrants.

  6. Correlation is not causation. It is the molecular mechanisms of diseases like Alzheimers and Parkinsons that are proving so elusive. There is an intense debate in genetic research re: how definitive and predictive of future illness genetic markers are. Anne Glazier’s paper in Science (“Finding Genes that Underlie Complex Traits”, v.276, 20 Dec. 2002) remains the definitive discussion of this issue. It’s worth reading her paper.
    Many so-called “predictors” of disease risk in polygenetic diseases have proven to be worthless generators of anxiety, not gateways to meaningful discovery. Agree w/ the pro-choice position Linda advocates. However, it is far from clear whether the type of data needed to find cures for these diseases will emerge from the personal genomics companies.

  7. We fully agree that this type of openness (and knowledge) isn’t for everyone. As Jeff says, he’d rather not know what his genetics have in store until there’s specific action to be taken. (This is a chicken/egg problem; how do we get to the point where we know what these actions are without more data?) Luckily he may benefit from those of us who will be learning and sharing and driving faster progress toward either better (personalized) treatments or prevention of many diseases. We’re pro-choice when it comes to getting your own genetic information. How people go about sharing it is up to them. Simple as that.
    Linda Avey, Co-founder, 23andMe

  8. Hi Matthew,
    Thank you for mentioning CureTogether! I’m personally encouraged to see so many new genomics and health 2.0 companies emerging. The more people rally around and work together, sharing knowledge and analyzing data, the faster we can work towards making meaningful discoveries to help treat and ultimately cure disease.
    With sufficient motivation, people can do amazing things in amazingly short time frames – like the first moon landing. And with so many minds around the world connected in this digital age, I think the speed of progress will only increase.
    I share your hope that we can work fast enough to spare Sergey Brin and millions of others from debilitating diseases like Parkinson’s.
    Alexandra Carmichael
    Co-Founder, http://www.curetogether.com

  9. My father died of the complications of Parkinson’s Disease a decade ago. It was heart rending to watch what happened to a vigorous, active person I loved. Believe me, I’m keeping the revolver close to my own bedstand. . .
    I can tell you I have absolutely no interest in knowing if there is a genetic risk factor for me until there is something we can do about it. Don’t hold your breath on the science. It is advancing in the degenerative diseases of the nervous system at a seemingly glacial pace.
    Brin’s case raises serious questions about the business premise of the personalized genomics sites you wrote about. I think the market for this type of information is really limited for precisely the reason you discussed.

  10. I have worked in the healthcare field for a number of years and know well the devastating effects of Parkinson’s. My thoughts are exactly yours in that I hope all of the knowledge that we are gaining will help, in the not too distant future, to avert some of the worst consequences.
    Marge
    http://www.remakehealth.com