A revolution in genetics is leading to almost weekly discoveries about genes linked with diseases such as diabetes, but also creating a dilemma for medical scientists: Should they tell the patients whose DNA was used in the research that they may be at risk for a serious illness? At present, that's almost taboo because of privacy policies governing most medical research.
"Researchers are coming up with more and more information, but we're using 'privacy' and our own ingrained paternalism as excuses for not sharing information that could be important to [individual research] subjects," said Dr. Isaac S. Kohane, associate professor of pediatrics at Harvard Medical School and a researcher at Children's Hospital in Boston.
Now, in a break with research tradition, Children's is creating a pilot program that will enable families whose children provide DNA for broad medical research to receive individually tailored information on the findings. The Harvard-affiliated hospital plans to use computer technology and counselors to allow families access to research while still guarding their privacy, as required by law and research ethics....
Comment. This is an elegant twofer: a win for access and a defeat for a one kind of medical paternalism (withholding information from patients for their own good).
Posted by
Peter Suber at 5/15/2007 04:46:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
