Google's Guinea Pigs
Google's Guinea Pigs | Mother Jones: "The implied promise of the consumer-genetics industry, and its main selling point, is that knowing your genetic fate leaves you somehow better prepared to tackle future health problems. 23andMe, perhaps the best known of these companies—thanks to an Oprah appearance, celebrity spit parties, and a branded blimp seen flying over Silicon Valley—even hosts a Facebook-type function that lets customers share and compare genetic predispositions for, say, Parkinson's disease and swap tips for coping with diseases they have or may one day get.
But the sales pitch obscures the true point of the tests, and even the fine print only hints at it. 23andMe wants customers to merge their genetic profiles with online personal health records like those Google has set up for people to track their medical information. Both Google and its cofounder Sergey Brin—who is married to 23andMe cofounder Anne Wojcicki and has a family history of Parkinson's—are big investors in the firm; marrying their customer data would enable 23andMe to pair clients' genetic data with their actual physical conditions. As it turns out, 23andMe's long-term revenue model has little to do with selling kits and everything to do with selling customer information to drugmakers and others in need of human guinea pigs for clinical research. The company hinted at this in July by calling for people with specific diseases to take part in an in-house study for no pay, other than a $300 price break on a personal genetic profile. 'We are the broker,' cofounder Linda Avey conceded to me in a recent interview. 'We make the connection between [the drug firms] and the individuals.'
To realize the dream of personalized medicine, pharmaceutical and biotech companies will need reliable clinical data on hundreds of thousands of people. Most diseases, after all, depend on the complex interplay of many genes and environmental factors. The New Jersey-based Coriell Institute for Medical Research, a nonprofit that shares biological materials with researchers, is already preparing for a large SNP study by recruiting 10,000 volunteers. It hopes to eventually attract 100,000, offering free genetic profiles in exchange for extensive personal and health information. A new company, TruGenetics, has also offered 10,000 free profiles, and plans to profit from selling the information it collects. 'When you get into predicting a future outcome, one needs that tightly controlled model,' explains David Speechly, a vice president for genomics research company Celera."
But the sales pitch obscures the true point of the tests, and even the fine print only hints at it. 23andMe wants customers to merge their genetic profiles with online personal health records like those Google has set up for people to track their medical information. Both Google and its cofounder Sergey Brin—who is married to 23andMe cofounder Anne Wojcicki and has a family history of Parkinson's—are big investors in the firm; marrying their customer data would enable 23andMe to pair clients' genetic data with their actual physical conditions. As it turns out, 23andMe's long-term revenue model has little to do with selling kits and everything to do with selling customer information to drugmakers and others in need of human guinea pigs for clinical research. The company hinted at this in July by calling for people with specific diseases to take part in an in-house study for no pay, other than a $300 price break on a personal genetic profile. 'We are the broker,' cofounder Linda Avey conceded to me in a recent interview. 'We make the connection between [the drug firms] and the individuals.'
To realize the dream of personalized medicine, pharmaceutical and biotech companies will need reliable clinical data on hundreds of thousands of people. Most diseases, after all, depend on the complex interplay of many genes and environmental factors. The New Jersey-based Coriell Institute for Medical Research, a nonprofit that shares biological materials with researchers, is already preparing for a large SNP study by recruiting 10,000 volunteers. It hopes to eventually attract 100,000, offering free genetic profiles in exchange for extensive personal and health information. A new company, TruGenetics, has also offered 10,000 free profiles, and plans to profit from selling the information it collects. 'When you get into predicting a future outcome, one needs that tightly controlled model,' explains David Speechly, a vice president for genomics research company Celera."
posted by Hugh W at 5:12 AM
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