Genetic Future

Misha Angrist points me to the launch of TruGenetics, which basically looks like just another genome scan company with a unique gimmick: they’re giving 10,000 scans away free.

What’s the business model here? The registration page provides some hints:

Your questionnaire responses and genetic information will be used for genetic research. One of the main goals of TruGenetics™ is to develop a unique research database for conducting genetic studies. Your decision to use TruGenetics’™ services indicates that you are willing to contribute your questionnaire responses and genetic information to the TruGenetics™ research database. [...] TruGenetics™ may conduct this research, or may partner with another organization, including non-profit and commercial entities, to conduct research. TruGenetics™ may charge a fee for conducting research using this database.

[...]

You will not benefit directly from contributing your information to the research database. However, important discoveries might be made through this research, and this might significantly help other people. If these discoveries are validated and accepted by the scientific community, we will provide you with this information as it pertains to your genes. This research may also lead to the development of a commercial product. You will not receive any payments if this occurs.

Looks to me as though the business model here is pretty much the same as 23andMe’s fundamental strategy – recruit customers, get them to provide both genetic and phenotypic data, look for novel associations and then (the tricky step) figure out a way to monetise said associations by selling them on to pharma or biotech companies. The only difference is that TruGenetics is willing to absorb more of a loss than 23andMe in developing that potentially saleable resource.
Ten thousand individuals is enough to power a reasonable genome-wide association study (GWAS) for one complex trait, or 2-5 moderately-powered GWAS for much more simple traits (e.g. drug response). Ideally, customers would be recruited on the basis of falling into specific phenotype categories (e.g. disease cohorts and healthy controls), so it will be interesting to see if customers have to fill in their phenotype survey before they are given any guarantee of receiving a free scan.
The big question is what genetic markers you could possibly find with 10,000 people that won’t be scooped up by academic GWAS consortiums before you can finish your analysis and submit your patent applications. You’d need to target a phenotype that was sufficiently medically relevant to be worth selling, but simultaneously sufficiently obscure to not be the target of massive GWAS already in the pipeline. 
Alternatively, perhaps the company is most interested in recruiting perfectly healthy individuals from specific populations to serve as a shared control group for disease-specific GWAS being performed by other groups; this could potentially be a fairly valuable resource. I’m speculating pretty wildly now, so I’ll leave it there.
I’ve signed up, but I’ll need to hear more details from the company before I commit to handing over my genetic and medical details. I’ll let you all know when I do.

Comments

  1. #1 Steven Murphy MD
    June 19, 2009

    Daniel,
    Very interesting game. It is called gmail. It could be a game changer. But, we have seen how Celera did with the build a database game:…..

    Steve.
    P.s. There is no good business model here, just hype.

  2. #2 Keith Grimaldi
    June 20, 2009

    Déjà vu – this was the “business model” of the internet boom days, give away services for free, build up a massive customer database…then sometime in the future make some money out of it. That last part was never realised.

    I think though there is something to say for the proposed, or possible, research using a large (100,000+ rather than 10,000) customer base. There is the opportunity to gather more environmental information (diet, exercise, medications etc) than the GWAS studies are able to do. Also the research would be prospective. All that assumes though that the customers will play ball and keep on answering the questionnaires, etc, which is unlikely given past experience

    Keith
    http://eurogene.biomed.ntua.gr/

    PS – I signed up too, but i fear that it will be only for US residents

  3. #3 Misha
    June 21, 2009

    I knew you guys would know:-)

  4. #4 Dan Vorhaus
    June 21, 2009

    Thanks Daniel.

    The other difference is that, at least in it’s immediately available (i.e., accessible without registration) materials, 23andMe is more explicit than TruGenetics about how it will handle data for research purposes. For instance, from 23andMe’s Consent and Legal Agreement:

    Prior to embarking on any such projects, 23andMe will establish a research advisory committee to guide such collaborations. 23andMe may grant researchers associated with partner organizations access to aggregated data from our database of genetic and other contributed personal information for specific research queries. 23andMe will only provide individual level data to external researchers upon individual consent from each customer. In addition, we will ensure that such research partners obtain clearance from institutional review boards, as appropriate, and agree to maintain confidentiality consistent with our privacy statement

    Steps like prior IRB review and approval are arguably important prerequisites for any research in this field. Of course, in light of recent developments at certain private IRBs, there may be reason to question the effectiveness of such protections.

    I’ve signed up as well and am equally curious to hear more details from TruGenetics.

    - Dan

  5. #5 Steven Murphy MD
    June 21, 2009

    Misha,
    I once asked my law firm if we could issue stock shares to research participants, the laughed at me. I guess that is questionably legal. But imagine how many people would keep accurate records and participate, knowing that as the study succeeds, they stand to profit…..

    Lots of confounding issues, but buy in would be certain.

    We were going to call it GPM Health.
    Steve

  6. #6 John
    August 21, 2009

    They just asked me to close my account. Is it already shutting down?

  7. #7 Daniel MacArthur
    August 21, 2009

    Looks like a delay due to a failure to secure funding (see Dan Vorhaus) – but I’ll email them to find out.