Mapping the Personal Genomics Landscape
Last week saw the first annual Genomes, Environments, Traits (GET) Conference, in Cambridge, Massachusetts. Timed to coincide with DNA Day 2010, the conference marked one decade since the publication of the draft consensus human genome sequence. The GET Conference was billed as “the last chance in history to collect everyone with a personal genome sequence on the same stage to share their experiences and discuss the important ways in which personal genomes will affect all of our lives in the coming years.” Not quite everyone with a public personal genome sequence attended – Craig Venter, Desmond Tutu, Glenn Close were all unavailable – but a majority of the genomic pioneers were in attendance and the GET Conference was a one-of-a-kind event.
For those who missed the GET Conference, several high quality recaps are available. The most detailed is A Day Among Genomes, by Carl Zimmer of Discover’s blog The Loom. More targeted reflections on the conference and related events come from Emily Singer of Technology Review summarzing key trends highlighted by the genome pioneers (Singer also has a related piece on the difficulties of understanding human genomes), David Dobbs of Neuron Culture on genomes, cool conferences, and what the hell to tell people about behavioral genes, and Turna Ray of Pharmacogenomics Reporter on the recent Myriad Genetics decision, and its impact on the business of patenting genes. If you’d like even more detail, the Twitter community provided real-time play-by-play.
While there’s no need for a further summary, the GET Conference does provide an occasion to look at the evolving personal genomics landscape in a more holistic fashion.
Is deCODEme Taking a Page from the 23andMe Playbook?
Daniel MacArthur of Genetic Future provides coverage of the decision by direct-to-consumer (DTC) genomics service provider deCODEme to offer existing 23andMe customers the ability to upload their raw 23andMe data to the deCODEme service. For free.
MacArthur correctly notes that the value of the genome scans provided by companies such as 23andMe and deCODEme lies not in the actual creation of raw genetic data but in the interpretation of that data, and wonders why deCODEme has decided to give that away for free. Here’s MacArthur’s take:
So, why the free offer? I’m guessing deCODEme is gambling (quite reasonably) that offering free uploads will attract a non-trivial number of 23andMe customers over to deCODEme’s interface. That then provides the Icelanders with an opportunity to give people a fair trial of their own interface, and hopefully to impress them with the quality and accessibility of the data provided.
That seems reasonable, and many 23andMe customers are likely already familiar with porting their raw genetic data to other interpretive tools – Promethease, for example – so perhaps this puts deCODE in front of a group of individuals who would not otherwise be in the market for a duplicative genome scan. (23andMe appears unconcerned by the prospect of a side-by-side comparison of its service with that of deCODEme.)
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deCODE Declares. Now What?
If you’re a regular reader of the Genomics Law Report – or the Wall Street Journal for that matter – by now you have probably heard the news: deCODE genetics, Inc. has filed for Chapter 11 Bankruptcy protection.
Given deCODE’s recent financial struggles, this latest development is hardly a surprise. Indeed, two months ago, we anticipated this very event when we asked a hypothetical question: “What Happens if a DTC Genomics Company Goes Belly Up?” That’s precisely the question that deCODE’s customers and creditors are asking today.
In our original article, which was initially published in three parts on September 14, 15 and 16 at Genetic Future, we looked at the interplay between the privacy policies of DTC genomics companies and the relevant bankruptcy law statutes, and offered some educated guesses as to how courts and companies would handle the sale of a bankrupt company’s sale of its customers’ genetic information.
The coming weeks will see that analysis tested in Delaware bankruptcy court. In the meantime, there is a lot to unpack in this morning’s deCODE announcement.
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23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing
Late Friday afternoon, direct-to-consumer (DTC) genetic testing company 23andMe announced a change in its game plan. Currently, 23andMe offers a single product – a $399 genotyping service that provides customers access to information about their genetic ancestry as well as genetic variants linked to certain other traits and diseases, including diabetes, Parkinson’s disease and certain cancers.
Beginning this Thursday, November 19th, that $399 service will be cut in two. Customers will have the option of purchasing a $399 “Ancestry Edition,” which includes 23andMe’s new “Relative Finder” tool or a $429 “Health Edition,” which includes testing for variants associated with genetic diseases and other traits, carrier status and drug response. The complete package will be $499. At Genetic Future, the indefatigable Daniel MacArthur has already covered 23andMe’s announcement and highlighted several of the most salient points.
Today, in three separate commentaries, I analyze 23andMe’s announcement and its implications for the DTC genetic testing industry:
- In “A Fundamental Right to Genetic Information (Now More Expensive Than Before),” I look at the unexpected increase in price of 23andMe’s service and the impact of the company’s new model on its customers’ ability to exercise their “fundamental right” to access their genetic information.
- Next, in “The Open Secret of DTC Medical Genetic Testing,” I explain why separating recreational genetic testing from medical genetic testing is likely to provide 23andMe – and other companies employing the same model, including Pathway Genomics – with important flexibility in dealing with future changes, whether driven by regulatory or market forces.
- Finally, in “DTC Genomic Research: Revolution or Minor Uprising?,” I discuss recent under-the-radar changes made by 23andMe to its pioneering DTC genomics research activities.
A Fundamental Right to Genetic Information (Now More Expensive Than Before)
This is the second of four related posts analyzing 23andMe’s decision to separate its health and ancestry DTC genetic testing services. For more please see 23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing, The Open Secret of DTC Medical Genetic Testing and DTC Genomic Research: Revolution or Minor Uprising?
An Unexpected Increase in Price. In considering 23andMe’s new model from the consumer perspective, the most surprising development is that the announcement comes with a price increase. With the steady drumbeat of stories heralding the approach of the $1,000 genome, and the consumer expectation that prices for established technologies are meant to fall, not rise, the price hike was unexpected.
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The Open Secret of DTC Medical Genetic Testing
This is the third of four related posts analyzing 23andMe’s decision to separate its health and ancestry DTC genetic testing services. For more please see 23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing, A Fundamental Right to Genetic Information (Now More Expensive Than Before) and DTC Genomic Research: Revolution or Minor Uprising?
For well over a year, the DTC genetic testing industry in general, and 23andMe in particular, has been undergoing a shift in the way it characterizes and promotes its offerings. Where they once focused on the educational and recreational features of their services, DTC companies have rolled out an increasing array of tests and reports that appear unambiguously aimed at influencing their customers’ clinical or medical decision-making.
DTC Genomic Research: Revolution or Minor Uprising?
This is the fourth of four related posts analyzing 23andMe’s decision to separate its health and ancestry DTC genetic testing services. For more please see 23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing, A Fundamental Right to Genetic Information (Now More Expensive Than Before) and The Open Secret of DTC Medical Genetic Testing.
In sifting through all of the discussion surrounding 23andMe’s newly separated health and genealogy services I noticed one other interesting piece of information by omission: the $99 Research Edition appears to have recently disappeared from 23andMe’s product line.
In July, 23andMe announced a “new research model [that] makes it possible for large groups of people to assemble themselves into large-scale genetic studies without having to raise millions of dollars in funding, and then wait years for things to get rolling.” Termed the Research Revolution, the model was simple:
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Genomic Research Continues To Go DTC
Way back in July I wrote about an emerging dimension in the DTC genomics space: direct-to-consumer genomic research. That article focused on the activities of 23andMe, and TruGenetics, which made a summertime splash by offering free genome scans to the first 10,000 individuals willing to contribute their genomic information to a commercial research database. While TruGenetics has since faltered, 23andMe continues to push DTC research forward.
Last month, at the American Society of Human Genetics (ASHG) meeting, 23andMe presented some of the first preliminary DTC research results. Daniel MacArthur of Genetic Future discussed 23andMe’s findings (emphasis in original):
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