Hacking the (genetic) code
- 10 March 2014
"Technology is a part of every single element of modern life," said the Guardian's head of technology Jemima Kiss during a panel discussion of tech journalists at the South by Southwest Interactive conference on Saturday.
This truth was apparent on Sunday afternoon when Anne Wojcicki told a packed convention hall about her company's efforts to work with a piece of code many tech afficionadoes probably aren't too familiar with: the genetic one.
Ms Wojcicki is the CEO of 23andme, a company that boasts it is bringing genetic testing to the masses, offering $99 DNA analysis to anyone willing to spit in a cup and pop it in the post.
She addressed the crowd in a language they could all understand: as a technology evangelist.
"Everybody makes money off my being sick, but if I'm healthy then no one is making money off me," she said, calling it "one of the tragedies of public health".
"23andme was set out to change healthcare," she added. "The system sucks, so we have to do something to change it."
There are all sorts of valuable information that can be gleaned from bits and pieces of DNA, she said.
Are you more likely to get certain diseases, like diabetes, or succumb to an inherited condition, like cystic fibrosis? Do you have certain interesting genetic traits? And what is your ethnic ancestry?
Then came an inconvenient admission. Because of a ruling by the US Food and Drug Administration, "we are no longer providing you with your health information".
Last fall 23andme was the centre of controversy when the government agency questioned the reliability of its testing, leading customers to possibly seek out unnecessary or even harmful treatments.
The decision set off a fierce debate, covered by this blog, over the politics of genetic testing and balancing the rights to access individual medical data versus the government's obligation to protect the public from fraud.
Ms Wojcicki blazed through the roadblock, however, and continued to talk about the benefits of knowing the medical information hidden in your DNA.
She cited examples of parents who learned their children had misdiagnosed illnesses and customers who discovered life-threatening medical conditions.
She seemed to be nurturing a distrust in physicians and encouraging doubts about their competency, although she constantly emphasied that the genetic information would help you be their "partner".
She then talked about another aspect of 23andme that has generated controversy: its use of the aggregated information from thousands of genetic tests. Ms Wojcicki says that the information can improve the accuracy of genetic analysis.
Critics have worried, however, that 23andme was really just gathering data that it could later sell to interested companies. This was how it planned to profit, not through low-cost genetic reports.
Ms Wojcicki compared the process to the sales data collected by a retailer like Target, which uses it to customise its sales pitches.
When it came time for questioning, however, the audience - and interviewer Kara Swisher of technology website Re/Code - seemed suspicious.
"You should be paying us for access to our genetic information," read one person's tweet, which received applause from some in the crowd.
And what about security of the data? In a conference dominated by talk of NSA surveillance, internet security and privacy issues, questions about the security of the genetic information was inevitable.
"This is not you sharing a photo or talking about your drunken escapades at South by Southwest," Swisher said. "It's very serious information."
"I really believe there's a massive net benefit versus the risk when we're going to be combining the net data," Ms Wojcicki replied.
Technologists and tinkerers have been playing with technology for decades, tweaking code and constantly working to build the more perfect machine. Is it only a matter of time before the human body becomes just another system to hack?