Want to find out what makes you “stand out from the crowd”? Consider signing up for a research study!
Personalized genomics is a hot topic. Last week, an event in Toronto, Personalized Medicine: Are we ready? sponsored by the Canadian Institute for Advanced Research (CIFAR), had academics and industry representatives debating the issues in a public forum.
One company represented was 23andMe, a personalized genomics company from Silicon Valley, whose slogan is “genetics just got personal”. I decided to check out their website further after finding a short article from earlier this year, in the May 2008 issue of Science, talking about how 23andMe are conducting research on Parkinson’s with subjects who will participate in trials from the comfort of their homes, doing directed self assessments on motor abilities and tremors from their own computer. While this issue alone raises huge concerns about research validity and rigor, what I found on the website for 23andMe was more worrisome.
23andMe have a page on their website dedicated to, basically, recruiting people to take part in research. It is, for all intents and purposes, a recruitment flyer. And one, that I’d guess, would never be approved by most ethics review boards. Interestingly, they call the research area of their website, 23andWe, a very clever way of manipulating their slogan to imply collaboration. They promise direct benefits to individuals who choose to “leverage their data” by contributing it to research. These include:
“Direct research by participating in studies of conditions and traits you care about.
Learn new things about yourself – and what your genes may have to do with them.
Find out which traits make you stand out from the crowd.”
They do also note that participating can lead to societal benefits by “discovering new genetic associations” and “improving health care for everyone”– which is, while very laudable, perhaps overstated in this context.
Not many research ethics boards would approve a recruitment flyer that promises the kind of direct benefits that 23andMe is promising (I doubt most “participants” can, as stated, actually “direct” research projects about what is important to them), overstates the potential societal benefits and makes no mention of potential for risk of harm, while never telling you exactly what you have to do to take part in their research (Do you have to provide extra samples? Can you decide how your samples are used?) or what tangibles, if any, you might actually get from participating (Do you get an extra report? Can you see the research results?). True, it’s not a consent form – but we can agree that a recruitment flyer should provide basic information that is complete and transparent.
Should they just simply have asked: Would you like to allow us to do research on the sample you have provided for analysis? That would be more forthright. Far less sexy, perhaps. But as research ethicists, we’re not concerned about ensuring that recruitment flyers are sexy. In fact, we’re about ensuring that they’re not – so that they’re not more likely to induce highly suggestive potential target participants (like young enthusiastic students on Facebook who can become fans of 23andMe to take part in the company’s research just because it sounds cool and will help them “stand out from the crowd”.
Research Ethics Blog 
I’ve spent a few mintues on teh 23andMe website, and I think your analysis is a bit harsh. I think this is more than a recruitment document, and the research portion is represented adequately. The following are clips from the website which are a bit more resassuring that the clips you’ve featured:You should consider how others may use your genetic data before sharing it.Purchasing 23andMe’s service does not require you to share your genetic information with anyone, but it does offer you the option of making your data available to others. Before you decide to share your information, you should consider how those parties might use your genetic data now and in the future. For example, a motivated party with whom you share your data might be able to use our tools to discover things that you had not anticipated. It is also possible that future scientific research will shed new light on data you reveal today, giving it new significance that you would rather not share with others. Please see our policy forum if you would like to learn more about these important considerations. PrivacyPrivacy has become a subject of debate in today’s information age. We recognize that genetic information is sensitive for many people. We believe all efforts must be made to guarantee individuals complete control over access to their genetic information. We believe the potential benefits of sharing genetic information outweigh the privacy risks. 23andMe believes that by enabling its members to share their data, we are providing them a beneficial feature they want and are entitled to have as custodians of their own genetic information. 23andMe employs robust, multi-layered encryption and authentication methods and conducts regular audits of our methods to protect against unauthorized access to our systems. We also employ software, hardware and physical security measures to prevent unauthorized access to the computers where we store customer data. I’m going to look into this further.Share as much or as little as you want. You decide who sees your data. You choose whether to share all of your data, or just part of it. Multiple layers of encryption and regular security audits safeguard your
It’s worth pointing out the conflict of cultures, here.When Nancy says 23andMe’s recruitment page “would never be approved by most ethics review boards,” I take it she means university-based ethics review boards, ones set up to review the research proposals of university based researchers.It’s an interesting question whether the standards that apply to non-university-based research should be <>exactly<> the same, or not. Some might argue that the standards for non-university-based research could be lower (or rather that university-based research is held to an especially high standard due to the public trust engendered by the social status of universities and university-based researchers). On the other hand, as a business ethicist, I’d want to ask companies: given that, <>naturally<>, you want to be seen as an ethical company, why wouldn’t you want to hold yourselves to what are essentially the “gold standard” of research ethics, namely the requirements to which ethics review boards currently hold university researchers?For a different angle on this issue, see my < HREF="http://www.ethicsweb.ca/papers/higher-standards.pdf" REL="nofollow">“Higher Standards for Privately Funded Health Research.”<>
One of the concerns that I have about sites such as these as even though they may provide information to “patients/clients” they do not directly provide consultation/counseling in regards to what those results mean and just recommend discussing them with your physician. Guess what…you’re physician is not going to have a clue what this stuff means. What about involving genetic counselors to help with the interpretation. I think there will be some value to this type of thing, but it is just not quite there yet.