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How to Decode Personal Genetic Testing
The burgeoning market for direct-to-consumer genetic testing heralds a new revolution in genetic medicine, but the the upstart industry is drawing considerable attention for the regulatory and privacy issues it raises. In Sunday’s Outlook section of the Washington Post, Center for American Progress Senior Fellow Rick Weiss takes a close look at the personal impacts of these new testing services. Weiss suggests that we need to properly regulate this auspicious technology to harness its benefits:
The technology is undeniably impressive. For as little as $1,000, anybody who can drool into a mailing tube can now find out his or her genetic odds of getting any of 20 or more potentially debilitating diseases, including cancer, heart disease and diabetes. Most of these tests will not lead to a frank diagnosis, as happened with Gulcher. But discovering an inherited propensity toward a particular illness can motivate consumers — or, as they used to be known, patients — to get more frequent checkups, take preventive medicines or make lifestyle changes to try to ward off the specter of disease. At last, we seem to be on the cusp of the long-promised personalized-medicine revolution in which gene tests allow physicians to craft far more individualized and effective ways of keeping us well.
While the top officials from all of the major competing gene testing companies agreed that regulations over the industry must be standardized, Weiss does not believe this measure is enough. He calls upon the Department of Health and Human Services and the Food and Drug Administration take the lead on crafting smart policy. Genetic testing companies should also be more transparent about their technology, test results, privacy, and security systems, and the potential use of client specimens for experimental purposes, he argues.
Weiss will discuss the article online this morning on the Washington Post website at 11 a.m. EST.
UPDATE: Weiss discusses the challenges of direct-to-consumer genetic testing in CAP’s latest installment of the Ask the Expert videos.
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