By Sally Greenberg, NCL Executive Director
At a conference last week I heard the co-founder of 23andMe speak about using her company’s technology to look at our DNA to predict the risk of getting a number of diseases. Anne Wojcicki described how her husband’s DNA showed he had a gene that makes him a likely candidate for Parkinsons disease. She didn’t mention her husband by name, but he happens to be Sergey Brin, co-founder of Google.
The 23andMe kit gives consumers the chance to deposit their saliva into a vial, send it to the company, and receive a comprehensive report that can predict the likelihood of getting 12 different diseases, of having adverse responses to nine drugs, and test whether they happen to be a carrier for 21 different diseases.
I find the description of what 23andMe can do both thrilling and intimidating. Thrilling because you can look into your future. Intimidating because do you really want to?
Interestingly, a New York Times article about these gene decoding services suggests that consumers are slow to pick them up. Some of the companies – the Times listed four that are in the biz – have laid off staff and are not seeing their customer base grow in substantially. DeCodeMe, for example, has 10,000 customers and Navigenics has about 20,000, 5,000 of whom were given discounts to be in a study.
This is understandable. What if you find out you show signs you’re likely to end up with a certain disease, and your insurance company claims this was a “preexisting condition” and denies you coverage in the future? I spoke with Anne Wojcicki about that and other privacy concerns. 23andMe consulted the electronic privacy group, Electronic Frontier Foundation to review privacy issues when designing the technology, she said.
The technology is evolving, and the product makers are evolving with it. And the companies have been doing some useful work, like comparing those who suffered miserably with swine flu to those who did not, with the possibility of discovering some useful information that a drug company can use to design its vaccines. Still, using the study of genomes to gauge health care risks is really a brave new world for most consumers and one that may never catch on. Only time will tell.