10 Years Ago, DNA Tests Were The Future Of Medicine. Now They’re A Social Network — And A Data Privacy Mess. We were offered personalized medicine. Instead, we got Facebook for our DNA.
“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.
As I explored the reports offered by 23andMe and deCODE, I couldn’t help but agree — especially when deCODE wrongly concluded that I carry two copies of a variant of a gene that would give me a 40% lifetime chance of developing Alzheimer’s. (Luckily, it wasn’t cause for panic. I’d pored over my DNA in enough detail by then to know that I carry only one copy, giving me a still-elevated but much less scary lifetime risk of about 13%.)
Despite such glitches, it still seemed that medicine was where the payoffs of mainstream genetic testing were going to be. As costs to sequence the entire genome plummeted, I expected gene-testing firms to switch from using “gene chips” that scan hundreds of thousands of genetic markers to new sequencing technology that would allow them to record all 3 billion letters of our DNA.
So in 2012, eager to provide our readers with a preview of what was to come, New Scientist paid $999 for me to have my “exome” sequenced in a pilot project offered by 23andMe. This is the 1.5% of the genome that is “read” to make proteins — and is where the variants that affect our health are most likely to lurk.
Experts at the Medical College of Wisconsin in Milwaukee analyzed my exome. While they weren’t at that point able to tell me much of medical significance that I didn’t already know, the article I wrote from the experience in 2013 predicted a future in which doctors would routinely scour their patients’ genomes for potential health problems and “prescribe drugs that have been specifically designed to correct the biochemical pathways concerned.”
I’m glad I included an important caveat: “This may take several decades.”
By then, the revolution promised by 23andMe and its competitors was faltering. Navigenics and deCODE had both been acquired by bigger companies and stopped selling DNA tests directly to the public.
23andMe, backed by the deep pockets of Google and other Silicon Valley investors, had enough cash to continue. But it fell foul of the FDA, which had decided that the company was selling “medical devices” that needed official approval to be put on the market. In a 2013 warning letter, the FDA said that 23andMe had failed to provide adequate evidence that its tests produced accurate results. By the end of 2013, 23andMe had stopped offering assessments of health risks to new customers.
Since then, the company has slowly clawed its way back into the business of health. In 2015, it was given FDA approval to tell customers whether they were carriers for a number of inherited diseases; in 2017, it started providing new customers with assessments of health risks once more.
I recently updated my 23andMe account, getting tested on the latest version of its chip. My results included reports on my genetic risk of experiencing 13 medical conditions. Back in 2013, there were more than 100 such reports, plus assessments of my likely responses to a couple dozen drugs.
In the lab, discovery has continued at a pace, but relatively few findings have found their way into the clinic.
To read more of this article hit here