When Eugenia Brin was young and still living in Moscow, her beloved aunt Serafima received a diagnosis of Parkinson’s disease. Serafima was just 50 years old, with no access to effective treatment, so Brin cared for her in the way of close families, going after work to her apartment to bathe her and prepare her meals. “I loved her very much,” she says. “I watched her deteriorate, and it was pretty awful.” When Brin joined the Jewish exodus from the Soviet Union, immigrating to College Park, Maryland, in 1979, she began mailing therapeutic doses of synthetic dopamine to her aunt, but Serafima, unsure of when the next batch would arrive, hoarded the medicine, never using enough of it to bring much relief.
As she neared her own 50th birthday, Eugenia noticed her left foot beginning to drag. Parkinson’s is only inherited in about 10 percent of cases, scientists believe, and when Eugenia was diagnosed in 1998, she became “extremely upset,” she says. Like her aunt, she was young to be contemplating the disease, a relentless degeneration of neurons that ultimately throttles the muscles and creates hallucinations in the brain: “It does not stop,” she tells me. But Brin was also a parent, and like all good parents she felt responsible for her children’s future. If she had inherited Parkinson’s, she could also pass it on. One of her sons, Sam, was 11 years old. The other one, Sergey, had just founded Google.
At that moment, Google had three employees and was run from a garage in Menlo Park belonging to an advertising executive named Susan Wojcicki. In time, Wojcicki would become Google employee No. 16, and her younger sister, Anne, a health-care industry analyst, would marry Sergey and have two children, prospective heirs to Eugenia’s genetic legacy. Now Susan runs YouTube, and Anne is CEO of a company she co-founded called 23andMe (so named for the number of chromosomes in human DNA) that could help forestall that legacy—could “solve health,” as she puts it—by collecting the genetic information of a critical mass of humans on the planet. Anne launched her company with the conviction, which happens to be the conviction of many of her friends and peers, that health care in America is broken, inefficiently treating the sick while insufficiently supporting the well, and that, enabled by the power of Big Data, Silicon Valley can fix it—accelerating to light speed the development of drugs and therapies by harvesting unprecedented insights from a reservoir of the nation’s genes. By last fall, 23andMe had extracted and analyzed DNA from 650,000 people, making it one of the biggest genetic banks in the world. That was when the Food and Drug Administration stepped in. 23andMe was performing what it regarded as a medical test without its approval and without the oversight of any doctor, the FDA said, and until Wojcicki could demonstrate that those tests would inflict no harm, she was ordered to retreat from her quest to hoover up the world’s DNA.
But Wojcicki is undeterred. With 23andMe, she wants to do with DNA what Google did for data—because, after all, DNA is data. Want to compare huge numbers of people with hereditary Parkinson’s disease against people who carry a gene for Parkinson’s but are healthy? Here’s a database of millions: All a researcher needs to do is create the algorithm. Want to look at genetic variances among people with very complex diseases, like diabetes, or Alzheimer’s, or coronary-artery disease? 23andMe can isolate disease groups and scrutinize the genotypes within them. Want to figure out why a tiny number of folks taking a certain multiple-sclerosis drug also get blood clots? Cull the patients from the database, email them a questionnaire, and compare answers. And then there are those connections algorithms might make between genes and health that humans hadn’t even thought to ask about. These results might efficiently steer scientists toward especially promising targets for research, and the resulting discoveries—drugs, surgical procedures, nutritional information, eyeglasses, sunscreen—might then be marketed back to individuals who 23andMe already knows are predisposed to osteoarthritis or hereditary blindness or melanoma. It’s a vision of seamless scientific research that is also a business—like, say, Google—tempting you with products the data engine has already discerned you need.
23andMe collects that genetic information from individuals with a sleight of hand so quintessentially American that Tom Sawyer might have dreamed it up: It sells it to them. The first human genome was sequenced in 2003, after more than a decade of work and at a cost to taxpayers of $2.7 billion. But, over the next decade, the price of a gene-squencing chip plummeted while its capacity exponentially increased, and that chip is now the magical head of a pin on which a whole medical revolution could turn. By last fall, 23andMe could deploy genotyping technology to produce a personalized genetic report on more than 200 health conditions within three weeks for just $99—no prescription necessary. Customers spit into a tube in the privacy of their own homes, send the saliva sample to a lab, then wait for results, which arrive by email. The report gives users detailed ancestry information, the probabilities of their getting dozens of complex diseases, and their responsiveness to 25 drug therapies. It tells customers whether they have the BRCA1 mutations, which are associated with dramatically higher incidence of breast cancer, and whether they carry the genetic variant that corresponds to cystic fibrosis. It also provides party fodder: Do you smell asparagus in your pee? Are you prone to be addicted to nicotine or wired to run the 100-meter dash? To access all this tantalizing information, users have to agree to allow 23andMe to profit from their genetic data. “By providing any sample,” the terms of service read, “you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners.”