Large databases of patients' records are needed for important medical research, such as that into the causes of disease. But growing concerns about privacy have spawned a great many laws and regulations governing the use of personal data, including the UK's Data Protection Act, the EU Clinical Trials Directive, and the US's Health Insurance Portability and Accountability Act (HIPAA). These regulations are complex and can be interpreted in different ways by researchers, which results in important and worthy projects being delayed or blocked entirely.
The Lancet comments: "Better public education about how research works and about the benefits that can accrue from investigation of population data is urgently needed, as is the need to convey the message that advances in diagnostics and therapeutics are being held up by bureaucratic regulation. When patients are convinced that their personal information is being used under rigorously controlled conditions and in accordance with best research practices, they are likely to agree to give up a small amount of individual privacy for the greater societal good that can come from population research. The future of our health depends on it."
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Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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