23andMe advertises itself on its website as a way to 'meet your genes'. You can send off a spit sample, and for $99-$199, a report based on your genetics will be emailed to you a few weeks later.
Host Stephen Dubner interviews Anne Wojcicki, the CEO and founder of 23andMe, in what is a fairly illuminating Freakonomics podcast episode.
I was certainly not immune to the allure of the 23andMe kits when they first stirred up a YouTube craze a few years ago. Who wouldn't want to find out which ice cream flavour they are biologically predisposed to enjoying? The other aspects of this service, like its ability to reconnect family members, are discussed in this podcast, and it was interesting to hear that what I had only ever heard of as a bit of fun may have real medical value.
Wojcicki explains that 23andMe offers 10 FDA-approved genetic risk reports for conditions like Alzheimer's disease and Parkinson's disease. The 'right not to know' this more serious information is sidestepped by adding an 'additional layer of consent' for reports containing health information.
The service also enables people to find out if they are carriers for genetic diseases like cystic fibrosis, a key piece of information needed for family planning. In this, we see the value of 23andMe as it is a fast and relatively inexpensive way of obtaining some crucial information about yourself. However, gaining knowledge of potentially life-changing information like this can be distressing and many other companies provide genetic counselling so that customers can make informed decisions on how to proceed with this knowledge. This is perhaps a service that 23andMe should be offering to those who test positive for mutations or carrier genes so that receiving these genetic risk reports allows customers to decide what is best for them.
The distribution of these reports to misinformed customers may cause more harm than good. Wojcicki says that ‘there is a responsibility for the consumer to get educated’ but this can only happen if they are provided with the proper tools, and one could argue that further support offered and an idea of what to do next is a part of that education process.
Dubner also questions whether giving this medical information to people will actually cause them to change their behaviour. He quotes a British Medical Journal study showing that genetic testing does not significantly influence behaviours, and so 23andMe's claims to improve health may not be appropriate. Wojcicki responds saying it is 'sad' that the medical world has decided that people are 'not willing to change', and in this, she makes a valid point. However, Dubner highlights the difference between making changes and looking to make changes, suggesting that the information provided may cause people to investigate changing their lifestyles but not actually implement these changes. If this is the case, then the benefits of 23andMe as described by Wojcicki may have a smaller influence on the customers than described.
This podcast episode is particularly informative on the hotly debated topics of data usage and privacy. In 2018 GlaxoSmithKline, one of the world's biggest drug makers invested $300 million in 23andMe in exchange for the rights to use genetic data from the customers for new drug discovery. The kits can indeed 'make a constructive difference in the healthcare space' as multitudes of data are collected from people suffering from depression, heart disease, and many other conditions that require new drugs.
However, Dubner reveals that many listeners of the show had questions about the privacy of their data and while many like the idea of 'advancing science' some have queried why they are paying for their data to be used when it should be the other way around. Wojcicki's response is that her customers are 'not interested in a $50 cheque', but it is interesting that the listeners of the show seem to think otherwise.
Overall, this episode of the podcast is undeniably a fascinating one to listen to. The MIT Technology Review predicts that by 2021, more than 100 million people will be part of commercial genetic databases. It is exciting to learn that this could massively benefit the drugs industry and subsequently improve many lives, but the question of whether customers are fully aware of how their data is being used clearly must be explored further.