Hacking the (genetic) code

 
Anne Wojcicki - shown in Austin Anne Wojcicki, shown here in Austin, is a technology evangelist

"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".

Start Quote

This is not you sharing a photo or talking about your drunken escapades at South by Southwest. It's very serious information”

End Quote Kara Swisher Re/Code

"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.

Audience member at conference Audience members recorded Wojcicki's presentation - and asked tough questions

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?

 

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  • rate this
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    Comment number 14.

    13. Imagine your health insurance premiums if the companies were privy and your profiles were a minefield of potentially serious conditions? Make no mistake, the health industry will use profiles to optimize their profits over maintaining you in good health at every opportunity!

  • rate this
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    Comment number 13.

    My wife and I have both received our genetic profiles. The accuracy was uncanny. Every potential illness called out in the reports was verified in our family's history. The FDA's block is a money control issue. They would rather have you sick and buying lifetime medication/treatment than avoiding a potential illness altogether, because you knew in advance what to watch out for. Illness vs Wellness

  • rate this
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    Comment number 12.

    "Is it only a matter of time before the human body becomes just another system to hack?"
    =
    Uncle Sam is not my Uncle or my friend but is Worlds Biggest Hacker US = brainwashed mindless Nationalism & Hypocrisy-even Liberals

    NSA wants all your DNA codes on their Database

    Big Data is new buzzword pushed out by Media following NWO orders for Wars Lies & Propaganda dumbing down all into subservience

  • rate this
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    Comment number 11.

    I am a member of 23andme and through partner sites have discovered valuable health information about my family. The Issue with the FDA is money and control. If independent science reveals short comings in their approaches, their cozy relationship with the Drug co's would be at risk. Who cares if my genetic data is hacked? What are they going to do with the information? rob my genetic bank account?

  • rate this
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    Comment number 10.

    Genetic Code is the new coin of the future. Treat it like a hit song, collect royalties for analysis seekers. Put the collected code into a Holding Company wherein anybody or anything attempting to access the code must past muster pay, short term this could be a bit of a roadblock, long term ... this is wayyy better than trusting some "I want to be your friend" company. The Holding Co. Difference.

  • rate this
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    Comment number 9.

    8. Can't imagine the likelihood of this company destroying data worth money over the long term - they will simply hold onto your DNA until a legal challenge has been tested then market as intended in the first place. We providing the code we had developed to a major US test company in Ca. for debugging on their test equipment - visited Taiwan plants the next year and our solution was everywhere!

  • rate this
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    Comment number 8.

    When you buy their service, you can opt in to share your data with "whoever" or request to have it destroyed after testing. It's a bonding contract. If they break it, fry them!

  • rate this
    +1

    Comment number 7.

    Anne Wojcicki and her company got caught trying to game the system, and were compelled by the US FDA to retreat.

    She and 23andme then tried this end-around at the Texas SXSW event, hoping for a sympathetic audience reception--which to parlay into public approval, rather than opprobrium.

    At bottom, Wojcicki and her company appear to have no respect for anything save their power to make money.

  • rate this
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    Comment number 6.

  • rate this
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    Comment number 5.

    4. For decades the health insurance (sic) industry denied coverage for people with 'pre existing conditions' - Obamacare made this illegal (insurance companies promptly jacked up rates). Now the primary item in the Republican's reelection toolkit is 'repeal of Obamacare' and all of it's provisions! Can you imagine the field day for the insurance companies if everybody's DNA was available on file?

  • rate this
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    Comment number 4.

    Conservative Americans are still up in arms decrying govt surveillance by Obama administration. Private companies collect & sell Americans personal information than many realize. While many willingly share their personal information on social media, cookies by merchants & ad agencies track every online activities. Americans should fear the private companies than their govt.

  • rate this
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    Comment number 3.

    This puts a whole new slant on the term "selfie" (cell-fee) :-) You heard it first here!

  • rate this
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    Comment number 2.

    If it were truly altruistic, it would be a non profit service.

  • rate this
    +1

    Comment number 1.

    23andme just another low-life parasite looking to make a buck off the public's health fears! Typical of US for-profit health care: "Everybody makes money off my being sick, but if I'm healthy then no one is making money off me,".. " & "Critics have worried, however, that 23andme was really just gathering data that it could later sell to interested companies.. " Unconscionable!

 

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