The Freakonomics blog has a long question-and-answer with Anne Wojcicki, of 23andMe. It’s interesting to see how she takes reader questions – many of the answers are what you’d expect a company management type to give, but a few are enlightening.
I’ll quote the last Q and A, because it is the most striking:
Q. How does all the snickering from genetic counselors about your site make you feel? Seriously, can you guys come to my medical school and defend yourselves, because theyre really dragging your name through the mud? Doctors arent willing to have anything to do with the site, but there have got to be some cases where the predictive power of the results you get is really high. Joel
What a question! “How does all the snickering…make you feel?” How can you answer that? “I pity them as they cling to their dying creed.” “I feel great joy because soon we will crush them!” “It makes me throw up a little in my mouth.”
Oh, well, naturally Wojcicki’s answer is more diplomatic:
A. While many doctors support 23andMe, individual empowerment application with respect to health information has sometimes been a protracted process in parts of the medical community. Earlier in the 20th century, cancer diagnoses were not shared with patients. Over-the-counter pregnancy tests and anonymous HIV tests both faced numerous hurdles before they got to the public. And with the arrival of the Internet, many doctors bemoaned the kind of information their patients now have access to (at times perhaps with good reason).
Nonetheless, history has come to show that these developments have improved peoples knowledge of themselves allowing them to be more involved in their personal health care. It is now hard to imagine a world where a patient would not receive her diagnosis, have easy access to pregnancy or HIV tests, or have access to the worlds vast online health information.
We believe that genetic information will follow the same course. ...
That continues with a couple of examples.
Right now is an uncertain time, with lots of companies attempting new models of business relationships based on genetic information. So far, genetic information is minimally useful, even in an actuarial sense across thousands of people. 23andMe has found creative ways to market genetic information, and continues to explore new approaches.
Consider Dan MacArthur’s post yesterday, “23andMe offers free genome scans to 4,500 senior athletes, seeking genetic fountain of youth”. That’s verging on the “free credit report” business model – give us your info, we’ll use it in our research and be able to advertise things to you (say, genealogy) that you might like. It’s creative – no doubt accounting for any “snickering” that genetic counselors might be doing. But this isn’t genetic counseling. There aren’t many genetic counselors who will go near phenotypes with heritabilities as low as cardiovascular disease or obesity. 23andMe is pitching a kind of armchair research participation, which can only be practical by making the information delivery highly automated (by that snicker-inducing website).
Free credit report. You input your name, taxpayer ID, and other information, a computer mines its database and gives you a number with supporting records. Then, you get additional information keyed to that number, informing you about issues related to your number and records. Plus, you’re marketed additional products based on your record and personal information – or signed up for a “credit protection” service with a monthly fee. The value of the business depends on the ability to sell advertising placement or additional services, which is enabled by the middle step – the narrative of non-personalized information, connected to the personalized record. It’s like a create-your-own-story book, except the computer turns the pages for you.
Is personalized genomics any different? Well, there are a few problems.
Credit scores really do matter to financial planning. So far, consumer genetic information doesn’t help medical decision-making.
Credit scores are actionable – people can do something about errors, if they know about them. There’s nothing you can do to change your genes.
There are critical times, planned relatively long beforehand, when the information is valuable – chiefly before large purchases like houses or cars. Not so with genetics – you won’t know when the information might become useful, and there may be no critical moment where you need to know.
Oh, and credit records are already accumulated by three large companies, who are required to make them available by request. If you want to get genetic information, you have to take cheek swabs from people – nobody’s doing that for you, yet.
The genetics company must make some accommodations then – developing the database requires some loss-leading and investment; the “continuing surveillance” of your record can be given as a free benefit of a large initial fee instead of a subscription that pays the free initial report. Late night television advertising won’t (presumably) work for genetics (although, there are loads of “male enhancement” ads…) – but maybe social networking will?
Well, anyway, I found this an entertaining exercise…it’s late though, so I’ll have to stop.