Accurate, Focused Research on Law, Technology and Knowledge Discovery Since 2002

For Preventing Disease, Data Are the New Drugs

Is giving up your biological secrets too bitter a pill? By Tim McDonnell: “…A new cadre of medical researchers believes that examining the full genetic information of as many people as possible will reveal not just the cures for health problems ranging from pre-term birth to cancer and autism, but the predictive insight to prevent them from happening altogether…But efforts like this have raised the hackles of privacy experts—some of the same folks already up in arms about the collection of millions of phone records and Facebook connections by the National Security Agency. The fear: A future in which your genetic information is as readily available as your Google searches to marketers, police departments, and identity thieves, not to mention health insurance companies and employers looking to lower their risk at your expense. While one of the first things Vockley does with a new genome is strip it of identifiers like a name, there’s no guarantee that the data can or will stay anonymous forever. In January, Yaniv Erlich, a data scientist at MIT, “re-identified the genomes” (legally “hacked” the identities) of nearly 50 people who had participated in studies like Vockley’s by connecting the anonymous genomes to surnames and partial genome data from distant family members publicly available on a family-tree website. “We’re going to enter into this era of ubiquitous genetic information,” Erlich says. Pre-term birth is just the beginning: Today, ITMI is gathering tens of thousands of genomes from other patients to find the root causes of cancer, diabetes, osteoarthritis, and cardiovascular disease. It’s also running a study that repeatedly samples babies over the first two years of life to see how genes’ functions change over this time. Vockley estimates that altogether, his lab has generated more than 10 percent of all the human genome data in the world. With a new in-house DNA sequencing facility currently under construction, he hopes to boost that figure to 15 percent by the end of next year.”

Sorry, comments are closed for this post.