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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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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What Happens if a DTC Genomics Company Goes Belly Up?
The following post was originally published in three parts on September 14, 15 and 16 in Genetic Future.
Direct-to-consumer (DTC) genomics companies are not immune to the current recession. When TruGenetics, a new player in the DTC genomics space, announced in June that it would be handing out 10,000 free genome scans, both Genetic Future and the Genomics Law Report raised questions about the financial viability of its business model, particularly in the current economic climate. Sure enough, on August 21, TruGenetics announced that it had been unable to secure funding sufficient to support its business model as contemplated. Frequent readers know that TruGenetics is not the only DTC genomics company that is struggling. The financial struggles of deCODE Genetics have been well chronicled (see here, here and here) and even new market leader 23andMe has undergone a dramatic shift in its top management as it pursues a new round of financing.
Ultimately, it was a recent headline here at Genetic Future—“deCODE Genetics on the brink of insolvency”—that started us thinking: what would happen if an established DTC genomics company actually went bankrupt? More specifically, what would happen to the genomic (and other) data held by the company? Genomic data is likely to be the company’s most valuable asset. Can that data be sold off to help meet the company’s debts? Bankruptcy can be a confusing and arcane process, with real risks and uncertainties for companies, their creditors and their customers.
What Happens When a Personal Genomics Company Goes Bankrupt
The first and second installments of a three-part series of guest posts by GLR contributors Daniel Vorhaus and Lawrence Moore are up today at Daniel MacArthur’s excellent Genetic Future blog. In this series, we consider what would happen to all of the personal information provided by customers of a personal genomics company if the company went bankrupt. In part one of the series, posted yesterday, we considered the legal relationship between consumer and company and reviewed the privacy policies of TruGenetics and 23andMe. In part two, we get into the legal issues governing the consumer information under the bankruptcy laws. Tomorrow, in the final post in the series, we discuss what all this means for consumers of personal genomics companies.
10,000 Free Genome Scans Too Good to be Tru? TruGenetics Announces Fundraising Difficulties
It was just over two months ago that TruGenetics splashed onto the DTC genomics scene with a promise of free genome scans for its first 10,000 participants.
Both here and over at Genetic Future, questions were raised about the TruGenetics business model. Based on the email that I just received from the company, it appears that TruGenetics’ potential investors had similar concerns:
Dear Registrant,
Thank you for participating in TruGenetics’ pre-registration Beta.
We wanted to inform you that despite our best efforts and contrary to our expectations, our funding sources did not come through and to date, we have been unable to secure funding for launching our genome scanning program. Given the current economic climate, we are also unsure how long the funding process will take.
We understand that some of you may want to seek genome scanning services from other companies. Therefore, we are offering you the option to remove your information from our database. Using your username and password, you can log on to www.trugenetics.com and delete your record from our database at your convenience.
We will continue our fundraising efforts and we will inform you of any progress toward our goal.
Again, we appreciate you pre-registering with TruGenetics.
Sincerely,
TruGenetics Management Team
It’s not a complete capitulation, but it doesn’t sound promising. At least for the moment, the free genome scans will continue to go to the senior athletes.
Genomic Research Goes DTC
The first generation of Direct-to-Consumer genetic testing and sequencing was populated by companies such as 23andMe, Navigenics and deCODEme that offered genotyping for a limited set of conditions, focusing primarily on genealogy and monogenic traits.
As the cost of generating genetic data continued to decline new companies brought new commercial offerings to the table, including whole-genome sequencing from Knome and, more recently, Illumina, and an increasing focus on the genetics underlying complex diseases and traits.
Recruiting Customers as Research Subjects
Even more recently a new dimension to the field of DTC genetics has emerged: Direct-to-Consumer research. In May of 2008 23andMe’s founders laid out their vision for customer-driven research. 23andWe, as the company’s research arm is known, launched its first significant project in March of this year when, aided by financial support from Sergey Brin, the co-founder of Google and the husband of 23andMe co-founder Anne Wojcicki, 23andMe announced a large-scale study aimed at the genetic bases of Parkinson’s disease. The study aims to recruit 10,000 patients with Parkinson’s disease to enroll. Participants in the study will receive 23andMe’s services for $25, a steep discount from the going rate of $399.
And on Tuesday, 23andMe announced what it is terming the “Research Revolution, a community outreach program that empowers people to drive the direction of genetic research.” In some ways this Research Revolution is genomic research meets American Idol, with the general public invited to vote by participating in the project and choosing from a list of 10 diseases to support. (Participation costs $99 for a stripped-down version of 23andMe’s service that does not include several key features, including ancestry information, carrier testing and access to the underlying raw genetic data).
