The public profile of direct-to-consumer genetic tests is growing rapidly, with the field forecast to become a billion-dollar business within three years. Services range from clearly recreational ("Do I have a gene that causes hard ear wax?") to personal ("Am I the biological father of my son?") to medical ("Do I carry the gene related to an increased risk of breast cancer?"). Most of the media attention to consumer genetics has been of the gee-whiz variety, but a number of observers have raised concerns about personal and social implications.
Leading the pack of the start-up gene test companies is Google-backed
23andMe, which last fall dropped its fee for a spit kit and an online account to view results to $400. The company's co-founder, Anne Wojcicki (who is married to Google's
Sergey Brin),
paints a rosy picture of the genetic future her firm will help shape:
"We envision a new type of community where people will come together around specific genotypes, and these artificial barriers of country and race will start to break down."
Along similar lines, the company described its recent price cut as a way to "democratize personal genetics." And the "values" page of its website says,
"We believe that your genetic information should be controlled by you....Though we store and help you interpret it, your genetic information is yours to have and explore."
Well, sort of. What 23andMe doesn't quite come out and say is that its real business plan isn't selling spit kits or interpreting DNA tests, but compiling vast databases that it can sell to researchers at drug companies. A former biotech writer of the Wall Street Journal writes:
The main point to remember is that personal-genomics companies don't intend to make money by selling the tests. Instead, their business generally depends on amassing a giant anonymized database of customer genetic information that can be mined for research studies by academic researchers or drug companies.
Although "your genetic information is yours to have and explore," customers cannot opt out of having their results shared with researchers.
Getting tens of thousands of people to pay in order for their genetic data to be resold required creative marketing. 23andMe started by giving free kits and memberships to prominent reporters. The company then used its connections to the rich and famous to portray a spit-collection tube as the latest high-fashion accessory. It took the opportunity of the elite gathering, the World Economic Forum, to entice the globe's movers and shakers with a thousand free test kits. An online photo stream posted by Esther Dyson, a 23andMe investor and board member, reveals the chummy atmosphere as the saliva of the elite was collected. Shown spitting into tubes and schmoozing are the top dogs of media, investing, marketing, infotech, biotech, academia, and pop culture. Moving stateside, 23andMe's celebrity "spit party," at which notables in cocktail attire ejected their saliva into test tubes, was hosted by media moguls and featured in both the New Yorker's Talk of the Town and the New York Times' Sunday Styles section.
Beyond a must-have accessory, what are the consumer genetics companies really giving consumers? Many claim to impart information about risks of specific serious medical conditions such as multiple sclerosis, Alzheimer's, Parkinson's, and breast cancer. But health officials in several states, including California and New York, have asked whether this amounts to practicing medicine without a license.
A number of observers - including some who typically greet DNA claims with unquestioning enthusiasm - have raised serious concerns about whether direct-to-consumer gene tests are ready for prime time. They point out that we know little about the accuracy of these tests because they're so inadequately regulated. And even when a correlation between a genetic variation and a condition is well characterized, having it doesn't mean you'll necessarily get the disease in question. It may increase your odds, but that doesn't tell you when, how seriously, or what to do about it. Customers will be receiving information about potentially life-or-death matters, outside the doctor's office and without genetic counseling.
And as my colleague Osagie Obasogie described in the context of race and biotechnology, the new genetic tests could easily stoke tendencies to explain our health-and our social and health disparities-in terms of inherited biology, rather than access to education, housing, and health care.
Medical genetics has great potential to improve our well-being, and there is much to be said for the democratization of medicine and the empowerment of the patient. But consumer genetics raises a number of caution flags. For now, be careful where you spit.
