Social DNA at 23andme: who owns your genome?

23andMe is a new personal genomics system that will have social features. Once your DNA is analyzed, you’ll be able to compare it with others’. People will be able to find each others by allele (genetic variation). Unfortunately, you have to shell out $999 for the kit and analysis, which looks at around 600,000 genetic variations. With a decent adoption rate, the company could have a robust genomic and phenotypic database, though it’s not clear from the article who would own the data and what costs and restrictions researchers might face if they wanted to dig into it. An article at Technology Review focuses quite a bit on personal use of the DNA data, and the social aspect of this particular implementation, but also on the question of h ow the data will be used. The company says it “will not sell genetic data to pharmaceutical companies, but it may sell access to the company’s pool of willing research participants or other fruits of its database.” In fact, the data will be quite valuable, and the cost of aqcquiring it will be covered by the users who pay to have their DNA analyzed – but are presumably giving up ownership of their own data.

According to the Technology Review article, the company also expects “a sort of grassroots research effort that mirrors the rising influence of patient-advocacy groups.”

If the trend attracts large enough numbers, people with particular diseases could come together to search their genomes for similarities. Or those who escaped a particular condition despite a high genetic risk could provide insight into lifestyle and other genetic factors that were protective.

We talked about just this sort of thing at a recent meeting of the e-Patients Working Group.

A cursory review of the 23andme web site didn’t reveal explicit information about how the company plans to use or monetize the data, or how the intellectual property question will be addressed. I would want to see much more about that before I would shell out $999 to pay for their analysis kit.

(Cross-posted from Weblogsky)

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6 Responses to “Social DNA at 23andme: who owns your genome?”

  1. Susannah Fox says:

    Thanks, Jon! When Kevin Kelly brought this issue up (http://www.kk.org/quantifiedself/2007/11/access-to-personal-genomics.php) I responded that I’d ask my siblings & parents for permission before submitting a sample. I’m pretty confident that none of us are a product of a “non-paternity event” but still.

    Here’s my citation for the above phrase, a NYT article from 2000 that obviously made a big impression on me, particularly since I have significant English ancestry:

    If Biology Is Ancestry, Are These People Related?
    http://query.nytimes.com/gst/fullpage.html?res=950CE1DF1E3FF93AA35757C0A9669C8B63&sec=&spon=&partner=permalink&exprod=permalink

  2. JessT says:

    Fascinating article about “non-paternity” events as a side note. Anyhoo, re: the expensive but intriguing DNA-social-networking idea, anyone else cautious about DNA testing with regard to insurance companies possibly using that info to deny coverage?

  3. Jess,

    > anyone else cautious about insurance companies
    > possibly using that info to deny coverage?

    Far more than cautious – makes me downright nervous.

    I ranted at length about this and related statistical issues in December. In the absence of forbidding regulation, it’s clearly in the interest of any insurance company to try to identify lower-risk populations and offer them an understandably lower premium. They do it today with such obvious measures as blood pressure and (ahem, moi) cancer history.

    We might propose that insurers may only discriminate based on an individual’s manifest evidence of risk, as above. But that collapses quickly into where we draw the line on what’s “manifest evidence”: does a gene qualify?

    This is off the topic of participatory medicine, but it does speak to patient empowerment, as opposed to patients just shutting up and taking what they’re given.

  4. I did more than a cursory examination of the 23andme website. So here are a few nuggets found in various location of the website:

    1. 23andMe’s mission is to be the world’s trusted source of personal genetic information.

    2. The genetic information provided by 23andMe is for research and educational use only. This means two things. First, the genetic information you receive from 23andMe is based on scientific research, and cannot be relied upon at this point for diagnostic purposes. Genetic discoveries that we report have not, for the most part, been clinically validated, and the technology the laboratory uses the same technology used by the research community has also not yet been validated for clinical utility. Second, by your participation in the 23andMe service you contribute your genetic information to our research effort to study various aspects of human genetics in an attempt to better understand the human genome.

    3. Your saliva, once submitted to and analyzed by us, becomes our property. Any genetic information derived from your saliva remains your information. We retain the rights set forth in the consent form and any additional terms of service.

    4. Collaborative Research: 23andMe may enter into partnerships with other investigators and organizations—non-profit and/or commercial—that conduct scientific research. 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 our database of genetic and other contributed personal information. 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. External researchers will have access to your genetic and other contributed personal information but they will not have access to your account information (e.g. name, contact and payment information). Once information is shared with research partners, we cannot guarantee that it will be destroyed upon request.

    Based on these 4 points and some additional information gathered on the site, it looks like
    you pay $1,000 in order to give the company a unique and resuable biological sample that they can use at their convenience. The results you get today are of very minimal clinical use. And you’ll have to pay again the company to get future updates based on scientific advances. The company is authorized to share you biological sample with other entities and cannot guarantee that these additional entities will destroy the data they obtained.

    Personal Conclusion: At face value, the cool quotient of 23andme.com is 100. Upon further analysis it gets back to a more appropriate -100.

    It is interesting to note that I couldn’t find a single mention of HIPAA on the entire site. Call me paranoid but I’m not ready to be a client!

  5. This topic is quite trendy on the Internet at the moment. What do you pay attention to while choosing what to write about?

  6. Lars Anders says:

    Thanks, some interesting stuff to read here. But i’m having some problems using Opera Browser. Is it only me?

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