It seems like, at least according to the Boston Globe article, this Harvard research pits the social good of research into ailments against the social good of protecting medical privacy. In this project, it looks like the database may include DNA samples protected by "advanced encryption" with patients' identities also on file. What's the best answer? How about letting the patients decide. There's a small but real potential cost to having your initimate medical data in the hands of a third-party researcher -- a security breach could have many negative consequences. (There have been recent examples of just these types of data mishaps by social scientists.) There's also a small but real benefit to having your information shared, especially if it helps your children or grandchildren stay in better health. It seems that the best person to make these sorts of decisions and weigh the tradeoffs is the individual whose records are at issue. That individual could require, for instance, that Harvard agree contractually to follow standard security guidelines and perhaps even pay a small sum for the privilege. (If the benefits provided by the research outweighs its cost, it will proceed.) Perhaps my understanding is wrong but it doesn't seem like this is what Harvard is contemplating when vacuuming up 2.5 million medical records. -Declan -------- Original Message -------- Subject: Harvard project to scan millions of medical files Date: Mon, 4 Jul 2005 21:56:08 -0400 From: Monty Solomon <monty@private> Harvard project to scan millions of medical files By Gareth Cook, Globe Staff | July 3, 2005 Harvard scientists are building a powerful computer system that will use artificial intelligence to scan the private medical files of 2.5 million people at local hospitals, as part of a government-funded effort to find the genetic roots of asthma and other diseases. The $20 million project -- which would probe more deeply and more quickly into medical records than human researchers are capable of -- is designed to find links between patients' DNA and illnesses. Although the effort could raise concerns about privacy, researchers say the new program, called ''I2B2" (for ''Informatics for Integrating Biology and the Bedside") would respect the strict guidelines set out in federal and state laws, and could be a powerful tool for many kinds of research. Hospitals gather huge amounts of information from patients each day -- from blood tests to chest X-rays and brain scans. For decades, researchers have pored through these records and gleaned insights that have helped millions of Americans. Now, the Harvard team hopes to put far more information at the fingertips of researchers, and to speed the process with sophisticated automation. Scientists said the Harvard work and similar efforts elsewhere increase the stakes in the nation's move to medical records stored electronically. ... http://www.boston.com/news/education/higher/articles/2005/07/03/harvard_project_to_scan_millions_of_medical_files/ _______________________________________________ Politech mailing list Archived at http://www.politechbot.com/ Moderated by Declan McCullagh (http://www.mccullagh.org/)
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