When word came out that the FDA was shutting down the popular Silicon-valley based genetic testing service 23andme, public sentiment was on the side of the company. With that said, proponents of shutting down 23andme were often doctors and scientists. They argued that it leads to unnecessary diagnostic tests and medical procedures. Strangely, the same could be said for a doctor’s visit.
Let’s think about unnecessary invasive procedures for a minute. Many steps exist between a woman learning through 23andme that she has a mutation in one of the BRCA genes linked to breast cancer, and her undergoing a double mastectomy. While the 23andme kit comes in the mail and the results in an email, surgery is hardly undergone with the same ease. You can’t schedule a double mastectomy the afternoon you get your results back. So instead of shutting down an entire company that provides valuable knowledge to many users, all of whom are paying out of pocket and not taxing the healthcare system, couldn't one simply require a second test prior to surgery? A second opinion is typically sought prior to any major medical treatment. How expensive is a second genetic test (and the first to be charged to the healthcare system) compared to preventing cancer, from both a personal and medical perspective?
Early detection of disease was the impetus for starting the company. Anne Wojcicki’s husband at the time, Google co-founder Sergey Brin, had a family history of Parkinson’s. Through the same technology used by 23andme, he learned he was a carrier of the mutation that leads to Parkinson’s. As a result, he has taken whatever steps he can to prevent and / or delay onset of the disease. What about the value to others like him that will be lost if 23andme is shut down permanently?
Some would argue that unnecessary diagnostic tests are a huge problem. A neurologist told VentureBeat that 23andme leads 20 year olds to seek MRIs for early Alzheimer’s detection. While no one would argue this is a valuable use of MRI, 23andme has less than 500,000 users, or 0.2% of the US population. How much excess testing can they be generating? Compare that to the $750 billion that is wasted annually on unnecessary services in the US, according to a 2012 report from the Institute of Medicine. Furthermore, no one requires that neurologist provide such an MRI for Alzheimer diagnosis, particularly since no such test exists.
It is arguable that there is no sector that is in more need of transformation than health care. The US spends more on health care than any other country (17.6 % of GDP in 2010, almost double the average of other developed countries) and yet does not make it into the top 20 healthiest countries. Attempts at healthcare reform, made challenging in no small part by byzantine regulations, have been largely unsuccessful. Strangely, 23andme does two things that critics of the current healthcare system have advocated for years. First and foremost, it emphasizes prevention. This is perhaps the single biggest factor that could positively impact delivery of health care. Second, it introduces the practice of having the consumer shoulder the cost of healthcare. I paid almost $400 for my kit a few years ago.
23andme is also part of a much larger movement known as the Quantified Self where people use data and technology, like FitBit, Zeo, and others, to keep personal track of their health. 23andme made genetic data available to developers through an API so that novel applications could be built on top of the platform. Imagine the amazing companies that could be built on top of such a database!
One could argue that 23andme represents to the medical establishment what a charter school represents to the public education system. Doctors and scientists may have greater difficulty than the general public in seeing the positive benefits that come from an entity that operates outside of their established system. Over time, the public has developed a balanced view of teachers’ feelings regarding charter schools. Perhaps the same balance regarding the views of medical professionals should be developed.