Web entrepreneurs and biotech: strangers from distant lands

Elrond: Strangers from distant lands, friends of old you have been summoned here to answer the threat of Mordor. Middle Earth stands upon the brink of destruction, none can escape it. You will unite or you will fall. Each race is bound to this fate, this one doom. Bring forth the ring, Frodo.
[Frodo puts the ring on a stand for all to see]
Boromir: So it is true. In a dream, I saw the Eastern sky grow dark. But in the West, a pale light lingered. A voice was crying, “The doom is near at hand, Isildur’s Bane is found.”
[Reaches for the Ring]
Boromir: Isildur’s Bane…
Aragorn: Boromir!
Gandalf: speaking the words engraved on the Ring] Ash Nazg Durbatuluk, Ash Nazg Gimbatul, Ash Nazg Thrakatuluk, Agh Burzum-ishi Krimpatul.
[the light darkens and the air rumbles; Boromir backs away from the Ring]

Let us form the first real alliance of BT folks and IT people through personalized genomics (and later with regenerative medicine as I hope so), but take care, biologists and geneticists have way too powerful tools and web entrepreneurs are greedily looking for new territory with their unconceivable computational and storage capacity and perpetual hunger! Go, go, push, push! (Of course, there is no such thing as an outside threat of Mordor in this situation, the real threat (the other side of the reward coin) as in every revolutionary case is the shared ambition of tech people to make formerly impossible things possible).

The following words are from Welcome to the Future:

Some analysts predict that the genetic-testing market 23andMe is entering could be worth a staggering $12.5 billion by 2009. Naturally, this has attracted the interest of Web entrepreneurs. They see an industry that is largely unregulated (so far) and costs only a few million dollars to enter—the price of a few brilliant programmers, a website, and marketing—and are betting that people will pay to test their own DNA directly. One indication of the potential market is that online medical-information companies are starting to make real profits. WebMD, for instance, attracts 40 million users a month and expects to net more than $30 million this year, mostly from ad sales. “I’m convinced there is an early-adopter market here,” says Sue Siegel, former president of Affymetrix and now a venture capitalist at Mohr Davidow. “Millions of people are used to getting health-care information online.”

I ask Hood, who has met with Google and has long been a maverick bridging the worlds of biology and I.T., do Web entrepreneurs truly understand the limitations and pitfalls of this science?
“They absolutely do not,” Hood says. “The heart of predictive medicine is in getting clinical validation and working out the fundamental biological systems—how genes and proteins and other elements interact. I don’t think that most of the Web 2.0 crowd entirely gets this.”

So far, the world of consumer genetics has been a Wild West. A handful of genetic tests are regulated by the federal government (such as the one doctors order before prescribing Herceptin). Otherwise, companies have operated without fences. Pressure is building, however, for the feds to establish rules and standards for direct-to-consumer gene tests. Last year, the Federal Trade Commission issued a Facts for Consumers report that bluntly warns consumers to be wary of all companies that offer do-it-yourself genetic tests and promise to tell you that your genes can reveal a definitive risk factor for developing a particular condition. The report says the F.D.A. and Centers for Disease Control and Prevention “aren’t aware of any valid studies that prove these tests give accurate results.”

6 thoughts on “Web entrepreneurs and biotech: strangers from distant lands

  1. Any post with LoTR references deserves high marks.

    On the issue at large, I think it is certain that a good chunk direct-to-consumer diagnostics will end up falling under the FDA’s umbrella. I also think that eventually consumer genetics services will come under HIPAA rules.

    Is this good or bad? That depends on how you approach the problem, but expect additional regulation. And Lee Hood is quite right.

  2. “your genes can reveal a definitive risk factor for developing a particular condition.”

    Well, that statement is correct if you remove the word definitive. None of the articles or bloggers I read stressed the most important thing: DNA is not destiny. This is the main thing everyone, especially those who aren’t scientists, needs to understand. Talking about gattaca and so on isn’t helping, and completely misses the point that genetics isn’t going to, and in fact can’t, take us there. Even if 100% of people with a particular SNP eventually develop some disease, you still don’t know when it’s going to happen.

    I think the Gene Sherpa has a point. Bandying this stuff around with only a disclaimer of “oh, btw, our whole interpretation could be entirely wrong” is overselling things a bit. Most doctors have a very limited understanding of genetics, and if they’re about to be deluged with people asking questions about some mutation they have, it’s going to be a problem.

  3. Sure, Grady, it’s fixed. For me the highly probabilistic, statistical nature of personal genomics was obvious, that’s why I did not highlight it, but the point is taken. DNAture or Proteinurture: that is not the question here.

  4. Obvious to people who know genetics, but not obvious to everyone, and you just know the lay press is going to fail to explain this. The root of many people’s strong objections to screening is a misunderstanding that gives credence to genetic determinism.

    The more people understand DNA is not destiny, the less the government will feel they have to intervene with regulations. That’s why it’s so important.

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