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Monday, January 23, 2006

Personal data for public good: using health information in medical research

Personal data for public good: using health information in medical research

This report from a working group of eminent individuals, under the auspices of the Academy of Medical Sciences, has just been published. It argues that there is an urgent need to reform regulations governing personal medical data to improve public healthcare.

The report claims that research has been inhibited by confusing regulatory guidance, stifling bureaucracy and unnecessary constraints on researchers’ access to health data.

"The large numbers treated by the NHS and the use of electronic records should allow the UK to lead the field in analysing health data to allow better understanding and tackling of disease. Instead it has been hidebound by bureaucracy" according to the authors of the report.

Medical confidentiality and appropriate consent are important entitlements that must be protected by an ethically sound regulatory framework. Technological developments in database management present ever more sophisticated research opportunities. It is crucial that measures to preserve confidentiality and ensure appropriate consent adapt rapidly and in ways that allow research to proceed effectively, providing an appropriate balance between the rights of the individual and potential benefits to society.

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