Red tape tangles epidemiology

Scientists on both sides of the Atlantic say privacy bureaucracy is hindering research

Stephen Pincock
Jan 30, 2006
British epidemiologists are finding themselves increasingly tangled in a web of bureaucracy that makes accessing patient data difficult and time-consuming, the Academy of Medical Sciences said in a recent report. Their concerns echo the experiences of their American colleagues, some of whom continue to experience problems stemming from new U.S. privacy legislation."There is no doubt that there is a genuine and systematic problem in the UK," Robert Souhami, chairman of the working group that produced the British report, told The Scientist. "What the researchers are saying first of all is that when they come to put forward a research project [involving patient health records], they're meeting with widespread and often contradictory advice about the legality and confidentiality of their research."Specifically, researchers are finding themselves delayed or blocked altogether by a plethora of regulatory bodies who interpret the 1998 UK Data Protection Act or other confidentiality rules in...

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