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Cancer-gene test confidentiality: charity urges change in law

23 January 2009

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Doctors should be allowed to tell patients if they have inherited genes that increase the risk of developing breast cancer, a charity has urged.

At present, confidentiality laws allow only family members to pass on that information, which puts people who are estranged from their families at risk.

Professor Gareth Evans, of the Genesis Appeal – the UK’s only charity dedicated to preventing breast cancer – has now called for doctors to be allowed talk directly to the people concerned.

His team at the Genesis Prevention Centre in Manchester tested 100 individuals in two generations of five large families known to be carrying the high-risk BRCA1 gene.

When informed directly that they were in the high-risk group, many more individuals requested a genetic test, which enabled them to consider preventative measures.

As a result, requests to take the test doubled, which Professor Evans says shows that the direct approach reaches a wider audience than is at present allowed by the law.

One in 500 people carry the gene mutation, which indicates a heightened risk of developing breast cancer of up to 85% in a woman’s lifetime.

Copyright © Press Association 2009

Genesis Appeal