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”.