When I began my book project on consumer health technology, I had two classes of technology in mind for particular attention: Quantified Self (a.k.a. self-tracking) and personal genomics. I’ve found plenty of material to write about in the Quantified Self area. However I’ve been disappointed in my findings about personal genomics.
I’m also not so convinced anymore about the value of my own genetics results. I did a DNA test with 23andMe last September. 23andMe is the leading personal genomics company and receives plenty of media attention, thanks to its co-founder Anne Wojcicki and her Google-founding husband Sergey Brin. Google has invested in 23andMe and Brin himself is often mentioned as a test case, because he has an increased risk of Parkinson’s Disease.
A June 2010 profile in Wired magazine discussed how Sergey Brin has used 23andMe to try and lower his risk:
Parkinson’s is a poorly understood disease, but research has associated a handful of behaviors with lower rates of disease, starting with exercise. One study found that young men who work out have a 60 percent lower risk. Coffee, likewise, has been linked to a reduced risk.
Brin went on to tell the article’s author, Thomas Goetz, that he aims to cut his risk by half, “based on diet, exercise, and so forth.” He’s also banking on “the steady progress of neuroscience” to further reduce his risk of getting Parkinson’s.
It’s fantastic that Sergey Brin has taken those steps to reduce his chance of getting Parkinson’s. I’m certain it’s helped lower his risk.
The problem is, I don’t believe the majority of 23andMe users get that kind of useful and actionable information from their genetic data. Although my own 23andMe results were very interesting, I haven’t gotten much actionable data in the 6 months since I received my results. In short, I don’t know how to use my genetic data to make meaningful improvements to my lifestyle. I have diabetes type 1, so I’d especially like some insights on managing that. I’ve gotten many insights about managing my diabetes and overall health from self-tracking. But so far, nothing from 23andMe.
23andMe is trying very hard to make itself into a useful service. It’s about to unveil a re-design of its website, which among other things will “create personalized recommendations for you about such things as diet and health information you should share with your doctor.” It hopes to do this with “new content that combines both your responses to surveys with your genetic data.”
It definitely needs to do this, for a couple of reasons.
Firstly, it must begin to provide the majority of its customers with useful, actionable information. It’s all very well telling a 23andMe user that they have wet ear wax or an increased risk of kidney disease, but 23andMe must help its users understand what all of this data means for them and what – if anything – they can do to prevent diseases they’re at risk of getting. Not just that, but guide users in using their genetic data to make meaningful improvements to their daily healthcare.
The second reason personalized recommendations are needed is that the 23andMe website is currently hard to navigate and just a poor user experience all round. So hopefully the re-design improves that.
I’m a little skeptical at this point about what type of diet and health information will be delivered to me; and whether it will be meaningful and useful. I really hope it will. I’m still optimistic about personal genomics and I fully realize that we’re in the early days of this revolution. But 23andMe – and the genomics industry in general – can do a lot better to help ordinary people understand and utilize their genetic data.