Will 23andMe and Navigenics lock up your genome and charge you for the key?

Over the last few months, startups like 23andMe and Navigenics have attracted a fair bit of attention for promising to let ordinary people search through their own genomes to better understand their disease risk, genealogy and ancestry. (For our coverage, see the links at the end of this item.) But one of the first major attempts to take a close look at them — courtesy of the November issue of Portfolio — left me with the distinct impression that these companies may not actually be anywhere near as revolutionary as they seem.

In fact, they might well be a crashing disappointment. Many people (myself included) have tended to look at these startups — particularly 23andMe, with its close ties to Google — as heralds of “personal genomics,” which I’d roughly define as the process of obtaining, searching through and interpreting your individual genetic quirks. If what the Portfolio piece depicts is even close to the truth, however, what these startups bring to market could be far more restricted — not to mention expensive — than most of us have probably imagined.

Let’s put it this way: How would you feel about a company that offered to scan your genes, only to lock up most of the information it finds so it can charge you thousands of dollars a year to dribble it back out to you? I’m not sure the term “personal genomics” would even apply here — it sounds to me a lot more like “corporate genomics,” in which getting access to your genome would require handing it over to a company that assumes it knows better than you do which parts of your genome you’re entitled to see.

navigenics_logo.gifIf you’re not fond of that idea, you may be out of luck, because that’s pretty much exactly how David Ewing Duncan, the veteran science writer who authored the Portfolio piece, describes Navigenics’ business model:

Navigenics’ market is intended to be people who are healthy and affluent. Customers will be charged between $2,000 and $3,000 to have nearly a million genetic markers tested on a gene chip manufactured by Affymetrix. But Navigenics’ site won’t release all of the data collected by the chip, only the designated panel of gene tests. The company plans to offer information and telephone support from genetic counselors, and a subscription to its service will last a year. “Your DNA will be on file, and we’ll test it against new findings,” says Amy DuRoss, Navigenics’ head of policy and business affairs.

The “designated panel” of gene tests refers to the fact that Navigenics initially only plans to offer customers a set of 15 to 20 genetic tests for specific, treatable diseases. That’s in the same ballpark as what existing gene-testing services like DNADirect offer now, for a one-time fee that’s roughly comparable to what Navigenics apparently plans to charge each year. (Admittedly, that assumes the company charges $2,000 to $3,000 every year, when it might actually charge a lower subscription fee after a user pays a big up-front charge for the gene scan. So far Navigenics hasn’t said, although I’ve addressed the question to DuRoss.)

Navigenics and many outside experts believe that bioethics issues and the possibility that the FDA might want to regulate this nascent field justify exactly such a paternalistic approach. Anyone interested in that argument should really read Duncan’s piece — he clearly spent a lot of time with experts worried that individuals aren’t ready to deal with limited, contradictory and often-wrong interpretations of genetic data. (Most, although not all, of such concerns strike me as overblown, since people have been making life decisions based on limited, contradictory and often wrong scientific information — nutrition studies leap immediately to mind — for as long as that information has been available.)

What’s much more interesting to me is how neatly corporate genomics yields a classic locked-in, service-business model for the likes of Navigenics. In what other field, after all, could you even imagine locking an individual into an expensive service that subsequently provides only limited access to some of his or her most personal information? (Once you’ve paid thousands of dollars to have your genome scanned at one company, you’re unlikely to want to do it again somewhere else.) Credit reports and medical records are the closest analogies that come to mind, and both are freely available to consumers upon request. I can’t help thinking that the idea of becoming a “Microsoft of the genome” — i.e., a company able to charge again and again for updated versions of the same product — may have played a big role in Navigenics’ business thinking, not to mention that of its backers.

Maybe there are enough vain, wealthy people who’d be willing to put up with all that to make Navigenics a success — it’ll be very interesting to watch. Still, I can’t help thinking that corporate genomics doesn’t sound like much fun. To see why, flip back to the beginning of Duncan’s article, where Jay Flatley is scrolling through his own gene map, provided by 23andMe. Flatley, the hefty CEO of Illumina — a 23andMe partner that will perform gene scans for the startup — chortles as he discovers he has a “sprinting gene” associated with “fast-twitch” muscles, then looks to see if he’s prone to diabetes or “restless legs syndrome.”

It’s not at all clear from the Portfolio article if 23andMe plans to give its customers the freedom to make similar searches — the company apparently didn’t talk to Duncan, and to the best of my knowledge hasn’t said elsewhere how it plans to make information available to its customers. Still, the anecdote at least suggests that 23andMe may have a broader vision than Navigenics.

Here’s how Duncan describes the company’s plans, presumably as channeled by Flatley:

When 23andMe goes live, customers will be asked to spit into short plastic tubes or to swab cells from inside their cheeks and mail in the sample. 23andMe will then analyze the data in relation to reams of information about ailments, treatments, diet, and ancestry and compare the results with those of thousands of others who have been tested for genes associated with diseases and other traits.

The cybersynthesis will be channeled into a customized DNA diary on the website. The company is considering a feature that would allow people to then link their personalized pages to those of others who share their DNA—fellow sprinters, say, or people at risk for Alzheimer’s—just as you can now link to college chums on Facebook.

Of course, the idea of sharing your DNA with others via a new online social network — GeneBook? — might seem to many people every bit as creepy as the idea of corporate genomics seems to me. So let’s hope there’s plenty of room for a variety of approaches as personal genomics evolves, and that 23andMe and Navigenics really do complement each other in this respect — at least enough to offer potential customers a real choice.

Further reading:

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  1. […] critics of direct to consumer genetic tests (DTC), including David P. Hamilton of VentureBeat, have pejoratively referred to the process as “corporate genomics.” By selling these DTC […]