The Google Of Health Care
By Anna Allgaier
In 2006, Ann Wojcicki brought 23andMe to the world of Silicon Valley start-ups. Unlike most start-ups, 23andMe had financial backing from Google Ventures and instrumental investors like Yuri Milner. Company concept aside, what gave them such a hopeful start? Ann Wojcicki was married to Sergey Brin, co-founder of the notorious Google. The couple had something very similar in common; they both wanted “the world’s data accessible.” While Sergey had already accomplished this with his company, Ann had the potential to use her company to achieve this through a far more unique medium, our DNA.
The company advertised its mission to connect individuals to their unique, paired sets of chromosomes. The idea behind the company is that customers can submit their DNA (saliva) by purchasing a £125 kit and sending off their sample. This DNA is then analyzed in a lab, and the recipient can view their health and ancestral information online. This then helps them develop a better understanding of who they are and how they operate. At first glance, this sounds not only fascinating but also astoundingly useful. However, there are multiple reasons that a company would want to provide this intricate, labor-intensive service.
Board member, Patrick Chung revealed that the long-term goal is not “to make money selling kits, although the kits are essential to get the base level data.” They want to create the Google of personalized health care. Big Data like this can be revolutionary and as Ann herself stated it “is going to make us healthier.” If we want medical breakthroughs, we need to share our data and a significant amount of funding needs to go into researching it. 23andMe is able to accomplish this through collaborations with Pharmaceutical Companies such as Pfizer and Genentech. So far, these deals have contributed research to Parkinson’s, Crohn disease, Asthma, Colitis, Allergies and many other illnesses. “On average, a customer who consents to research contributes to over 230 studies.” However, is it ethical for the company to be making millions through selling people’s data to third parties? Is this beneficial or an exploitation of our rights? With the Genentech deal alone, they obtained a $60 million sum.
To gauge the scale of 23andMe, here’s a statistic from 2013: “To date, more than 200 million questions have been answered by 23andMe members. That’s more than have been answered on Yahoo Answers and Quora.” By the end of 2013, the company had 500,000 members. They now have over 1 million.
Genetic counselor, Laura Hercher explains how when doing these direct-to-consumer tests online there can be privacy and confidentiality issues that are out of our control. These issues are raised in the company’s ‘consent document’. The document specifies that users’ “genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. If your data is associated with your identity they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage.” It then goes on to say that 23andMe investigators and third parties might publish research results and, although the identification of individual-level data will be pooled, there is still the possibility that it could be linked back to the participant. The moment you click accept, your DNA is bound into a 10-year contract. If at any point you wish to cancel your membership, you cannot withdraw your data from studies it has already been entered into, and they can continue to enter it into, studies for 30 days after your withdrawal.
It’s difficult to form a concrete opinion on the ethical validity of 23andMe: the company has its faults, but it is impossible not to recognise the innovative work that they do and the scale at which they do it.
As this Privacy blog series has highlighted, nothing stored digitally comes with 100% privacy or anonymity. The best way to protect ourselves and our data, is to make sure we educate ourselves and become aware of the possibilities so that we can mitigate against misuse. In order to get a closer look at what the company offers, asks of it members and finds out about them one of our Developers, Anthony Cossins submitted his DNA and will be curating a piece for our private_i exhibition, using the data he receives from the company.
Our private i exhibition will take place at 31 New Inn Yard, EC2A 3EY and will be on from Friday 25th – Monday 28th September, 10am – 6pm.