28th August 2014
news

DIY DNA

Personal genomics: life-saver or Pandora's box?
Matt Jameson Evans | Founder of HealthUnlocked.com and Remedy UK

why oh why

I had the perfect present lined up for my father this Christmas. For a recently retired surgeon what better gift than a personal genomics kit from 23andme. Its ongoing stream of genetic self-insight would provide him with a medical amuse bouche via a spit-and-send kit wired up to an internet profile. And since our debate at HowTheLightGetsIn last y...

I had the perfect present lined up for my father this Christmas. For a recently retired surgeon what better gift than a personal genomics kit from 23andme. Its ongoing stream of genetic self-insight would provide him with a medical amuse bouche via a spit-and-send kit wired up to an internet profile. And since our debate at HowTheLightGetsIn last year, the price of 23andme had bottomed out from $699 to $99, placing it well within my budget. 

Unfortunately my pre-festive brainwave came on the 23rd of November, the day after the FDA sent out a cease-and-desist letter to 23andme ordering the company to stop marketing a product that repeatedly failed to prove its predictive calculations. Apart from thwarting my idea, the cease-and-desist letter went on to trigger the most widespread series of debates to date regarding the validity of unfettered access to medical information. From the New Yorker to the Daily Mail the pros and cons were laid out, establishing battle lines of of paternalism vs democratisation, or safety vs progress, depending on which side you stood. Case-studies of lives saved by spit-kits were countered by others in which Pandora’s box had been opened without the help of a medical or psychological guide.

In my view, web technology is on the point of precipitating the most significant, inertia-busting shift in the balance of power in medicine since the Enlightenment. Such profound change doesn’t come without pain and risk. 23andme acted as torchbearer for this movement, and the ensuing schadenfreude from various quarters was to be expected. But the world won’t be a better place without personal genomics, nor is the discussion likely to stop here. In fact, a Change.org petition launched by the TechFreedom think tank to urge FDA regulators to back off now has well over 10,000 signatures.

As a founder of HealthUnlocked, a social network for patients, now visited by two million people every month, I consider myself lucky to regularly witness the enormous impact that clear, contextualised information from peers offers people attempting to navigate their health. Of course these experiences, opinions and anecdotes are also not without risk.

We’re a fair distance away from implementing Vinod Khosla’s Silicon Valley view that algorithms will soon replace ’80% of doctors’. So until people-friendly health technology can be compared like-for-like with that used by professionals, perhaps things like 23andme should come with a clear warning to be taken as a complement to professional medical treatment. We have a similar warning alongside every opinion voiced in HealthUnlocked. Surely something similar from the FDA would have been far better than a ban?

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