23andMe
Update: oh wow, it turns out that the 23andMe contract always has stated that 23andMe destroys the sample after testing and will delete data on demand (at least, since March 2008). Full story coming. A lot of people have a lot of explaining to do…
Quickly: a few people have asked me to update my opinions about 23andMe. My previously stated opinions have not changed (I’m a customer of 23andMe, and I like it). Further, I don’t have strong ethical ideas about consumer products. 23andMe is a nerdy toy —like a novelty x-ray— not medical advice, and as long as 23andMe continues to organize and present good scientific information, I’m happy. Generally, I think that 23andMe sets a high standard for transparency, scientific tool usability, and responsiveness. Particularly, Andro Hsu, the Sci-tech liaison has been great, and 23andMe continues to make responsible adjustments. For example, I suggested a few months ago:
…Keeping the saliva sample violates medical research conventions, and that offends the ethical standards of others in the medical research community….
Solution: Add account deletion to the main FAQ and promise to destroy the saliva sample on account termination.
Apparently, 23andMe agreed and now destroys the saliva samples.
I think that there will be issues in the near future as “geeky toy” evolves to “obvious medical advice,” but I expect 23andMe to handle these growth issues responsibly.
What I don’t like about 23andMe is its wholehearted embrace of the American marketing culture and its media games. Unfortunately, that’s how business has to be done today, and I’d probably do something similar if I ran 23andMe (though my approach would be significantly less… estrogen-y…). Startups don’t have the luxury of non-commercialism, and most news media isn’t anything more than a marketing expense a few companies removed, so relax.
What I don’t like about the community response to 23andMe is when people seize on some tiny detail and spew some diatribe without actionable rational discourse. Transparency is so vital to good medicine, and attacking a company for every statement not prepolished by some PR shill strongly discourages transparency. That is wrong. Really, not every off-the-cuff statement by a company officer is a medical emergency. Significant medical misinformation must be corrected, but transparency is much more important to the future genomics industry. The significant medical misinformation I see doesn’t come directly from 23andMe, it comes from the parade of media bots swarming about the celebrity of the company. I can’t say the same for other genomics companies…
I certainly have my complaints about 23andMe, but I try to keep them to myself until I have something intelligent to say about them. And yes, I have willfully “picked a side” in the interest of pragmatism, though my real alligance goes to Coriell whom nobody knows much about, but that is the cost they incur because they don’t play the stupid media games. They are also less driven to “capture a market” because they have been a medical research institution for several decades, and judging from their huge warehouse of nitrogen-preserved cell lines, they expect to exist forever.
Think Gene at Technorati
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