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Patient information

Databases containing an individual's genetic data must be subject to clear, transparent and enforceable guidelines.

Pat Hagan(phagan@btinternet.com)

LONDON — For nearly 20 years, the international medical and research community has been wrestling with the problem of how to safeguard computerised patient information from abuse. It's an issue that affects everyone from the GP seeking the patient's consent to use such information, to the scientists teasing out findings from the data.

But in recent years the debate over how much data protection is needed, what's an agreed definition of informed consent and who will eventually own the information, has been given added impetus by rapid progress in gene sequencing. Now the issue is not just about who should have access to confidential patient files, but who has the right to the ownership of their genetic blueprint?

The World Medical Association (WMA) is attempting to agree international guidelines that will help to safeguard confidentiality and respect the rights of the individual, but which will also meet society's need for...

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