The end of the deCODEme personal genomics service?

This piece in Newsweek is a neat summary of the rise and fall of Icelandic genomics giant deCODE Genetics. Regular readers of Genetic Future will be aware that the company has been steadily bleeding capital ever since its launch over a decade ago, and recently declared formal bankruptcy. Since then the company has been bought up by US-based company Saga Investments. (For an excellent analysis of the implications of this sale, see Dan Vorhaus' post on Genomics Law Report.)

A reader emailed me to point out that buried towards the end of the Newsweek article is an ominous paragraph for customers of the company's personal genomics arm, deCODEme. Despite earlier promises that the personal genomics service will be continued, the article gives the strong impression that the days of the service are well and truly numbered:
A few weeks ago, meeting with Stefánsson in Boston, he proved his point. The two were mulling the fate of deCODEme, the consumer diagnostic test. Stefánsson said he still hoped to be "very modestly marketing" the test as of next year. Collier raised his eyebrows and said, "If you want one, you'd better buy it now." In other words: forget it.
The loss of deCODEme would mean the end of one of the "Big Three" personal genomics companies out there right now; and there are also increasing signs of financial strains on the other two competitors (23andMe and Navigenics). It looks as though 2010 will be a year of turnover for the industry, as some of the early players are replaced by newcomers offering quite different services and business models (such as the extensive carrier testing offered by the recently launched company Counsyl).

What will happen to the customer data generated by deCODEme if the service is abandoned? No-one knows for sure, but those interested in this question should revisit the excellent posts by Dan Vorhaus and Lawrence Moore on this topic here, here and here.

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It looks to me as if plans are afoot to improve the services there. So either this decision was made very recently, or they're making one final push to see what happens over the next few months, and if nothing changes they'll probably close shop.

The end of the (deCODEme) personal genomics service excellent entry is actually a double question (when parentheses are used).

I would refrain from commenting on the "end of deCODEme" as a single company, even if it was the first, and part of the "top three".

Daniel McArthur (and just about everyone) point out that survival of any DTC hinges on a better business model. As such, the other leading two (Navigenics and 23andMe) are no different. Their "growth pains" are substantial, e.g. the inevitable upgrade from microarrays, interrogating the tiny (up to 1.6 M bases out of 6.2 Bn bases) "SNP-tests", towards a targeted (algorithmic) search for structural variants over the affordable full human DNA are contingent only on time/money (to the extent that they are convertible, with limitations). Organizational issues are also very frequent and are eminently solvable.

The key questions are, therefore, if genomic testing service has a future at all - and if yes, what is the business model that will sustain it.

Francis Collins' book, fresh off the shelves, "The Language of Life - DNA and The Revolution in Personalized Medicine" effectively and definitely answers the naysayers. Futurists who may still voice their doubts about the future of genomic testing simply have not done their homework. Most likely did not get a chance yet to read Chapter I., page 1. of the book with the title "The Future Has Already Happened".

In all fairness, those behind the curve are lag only few months, perhaps up to two years. The book appeared early this year, and as we learn on page 84 Francis Collins in 1996 "found the idea of direct-to-consumer genetic testing completely unimaginable in my lifetime". Moreover, his turn-around only happened a mere two years ago (page XVII)- and the final conviction (as usual) was due to his own genomic testing by all three companies last Spring. Proclivities found were in line with his family history (as far as elevated risk for macular degeneration was concerned), but did not apparently occur in his family (as far as diabetes type II is concerned). Dr. Collins, an MD/PhD, head of NIH, immediately went on prevention program for both, modifying his diet, body weight (visible on his before and after portraits), etc; he apparently found DTC results "actionable". Conclusion of his chapter "So Personal Genomics is here..." reads "Given the early stage of DTC genetic testing, there are [those]...arguing that it is premature for this kind of information to be made available for consumers. I am not one of them" (pp. 89)

The "open question" remains, therefore, in what business model can such testing pay for itself in a manner (like the first rudimentary OS; "DOS", followed by "Apple OS" and "Windows" and killer apps) promising a hyper-escalation in a business sense.

One of the answers is given by (full disclosure; my new venture) HolGenTech, see YouTube where the heretofore "open" DTC-loop (not closing on empowerment of consumers) becomes a "closed business model" by both tooling up consumers for personal and participatory prevention programs, as well as providing interoperability of their genomic- and health-date, all overridden by their personal preferences.

If Newsweek is slagging off GWAS, as it does in this article, does that mean GWAS has officially jumped the shark?