A couple Christmases ago, I received two thoughtful and personal gifts: a boxed kit from 23andMe and another from ancestry.com. After almost two years, both remain unopened. In my reluctance to unbox either one lies the tension between the excitement of personal discovery enabled by modern science and fear of the loss of personal privacy. For brands, this is a new territory to navigate and a huge responsibility to assume.
Whose Data Is It Anyway?
The MIT Technology Review predicts that by 2021, more than 100 million people will be part of commercial genetic databases, a trend which is bound to raise a few questions. If DNA shows my propensity for certain conditions, will my profile be sold and then resold without my knowledge? Could the possession of one’s DNA--in the wrong hands--become the ultimate form of identity theft. Because our DNA holds markers to ethnic and racial heritages, can someone potentially label or limit me based on my genetic makeup? While my DNA may be safe today, should I worry about what the covenants and safeguards will be 10 years? From stories surrounding facial recognition to spit and acquit, the knowledge gained from DNA and personal data more broadly has sparked needed dialogue and has forced us to examine the responsibility as well as the culpability in the event of a data breach or stumble of any kind.
Changing Minds. Then the World.
Last month, I caught an interview with Anne Wojcicki, CEO of 23andMe, on Steven Dubner’s Freakonomics, and it began to shift how I view the debate surrounding consumer privacy. In Dubner’s fair and balanced style, he explores many of the perceptions and misperceptions regarding 23andMe, and by virtue, the emerging and growing category of products and services that rely on consumer data.
Although the conversation called attention to many of the fears that have kept me from sending in my kits, the discussion also helped me appreciate the incredible potential of the science and the unprecedented access and power that platforms like 23andMe provide me and everyone else—not to mention future generations. In the podcast, Wojcicki speaks compellingly on how 23andMe enables and empowers consumers with access and information about their own health that they had never had, which ultimately provides them with more choice on how to live and engage with their own well being. As Wojcicki shares her belief, “I’m a believer in humanity, that people given the right tools, people will step up."I started to realize that while I may have been focusing on what might be lost, I was also missing sight of what might be gained. The discussion helped expand my view of identity beyond a set of government-issued numbers or unique sequence of genetic code.
As debates swirl around the ethics of using data in law enforcement, surveillance, drug development and marketing, we find that privacy really is a central concern of modern life. But defining privacy and its potential place as one of our inalienable human rights has proven harder than anyone might have realized. For me, a deeper understanding lies at the intersection of privacy, transparency and our democratic ideals. If the pursuit of privacy keeps us from connecting with one another out of fear that our information will be used against us, then the fabric of society itself will be shot through with protectionism that diminishes the possibility of what we can achieve together. When information flows freely, it should be in the name of transparency—not in the loss of privacy. The real problem is keeping data open, accessible and out of the concentrated hands of only a few.
And while I may feel protective of the personal data that could be weaponized against me, I also consider the glut of information that exists in the world and how much more data we create every day. As Wojcicki says, “The world is changing pretty rapidly. And I’m happy that one of the unintended consequences of 23andMe is connecting people." In a similar spirit,I am happy to set it free in the hopes that someone—or anyone—can create a healthier, happier and more meaningful future for everyone.