Harvard project will vacuum up millions of medical files [priv]

[Declan McCullagh <declan () well com>]

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 () roscom com>


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/


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