10 Years Ago, DNA Tests Were The Future Of Medicine. Now They’re A Data Privacy Nightmare
“Genetics just got personal.” So boasted the website of 23andMe in 2008, just after launching its DNA testing service.
As we entered this decade, a small cohort of companies — 23andMe, its Silicon Valley neighbor Navigenics, and Icelandic competitor deCODE Genetics — were selling a future of personalized medicine: Patients would hold the keys to longer and healthier lives by understanding the risks written into their DNA and working with their doctors to reduce them.
“We all carry this information, and if we bring it together and democratize it, we could really change health care,” 23andMe cofounder Anne Wojcicki told Time magazine when it dubbed the company’s DNA test 2008’s “invention of the year,” beating out Elon Musk’s Tesla Roadster.
But in reality, the 2010s would be when genetics got social. As the decade comes to a close, few of us have discussed our genes with our doctors, but millions of us have uploaded our DNA profiles to online databases to fill in the details of our family trees, explore our ethnic roots, and find people who share overlapping sequences of DNA.
It’s become like Facebook for genes, driven by the same fundamental human desire to connect. And, as with Mark Zuckerberg’s social media behemoth, this is the decade we reckoned with what it really means to hand over some of our most personal data in the process.
It all panned out differently from the way I imagined in 2009, when I paid $985 to deCODE and $399 to 23andMe to put my DNA into the service of science journalism. (I spared my then-employer, New Scientist magazine, the $2,500 charge for the boutique service offered by Navigenics.)
I was intrigued by the potential of DNA testing for personalized medicine, but from the beginning, I was also concerned about privacy. I imagined a future in which people could steal our medical secrets by testing the DNA we leave lying around on discarded tissues and coffee cups. In 2009, a colleague and I showed that all it took to “hack” my genome in this way was a credit card, a private email account, a mailing address, and DNA testing companies willing to do business without asking questions.
Much of the rest of what I wrote about DNA testing back then reflected pushback from leading geneticists who argued that the companies’ visions of personalized medicine weren’t ready for primetime.