Urgent Changes Needed To Patient Confidentiality Laws To Prevent Breast Cancer Deaths

Main Category: Breast Cancer
Also Included In: Cancer / Oncology
Article Date: 26 Jan 2009 - 2:00 PDT

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Research by Professor Gareth Evans, of the Genesis Appeal - the UK's only charity dedicated to the prevention of breast cancer - has revealed that many breast cancer cases could be prevented by allowing doctors to directly inform those at high risk.

Current confidentiality laws mean that it is the duty of the family member to inform relatives that they could possess the inherited gene mutations, BRCA1 and BRCA2. These genes indicate a heightened risk of developing breast cancer of up to 85 per cent in a woman's lifetime. Doctors are currently prohibited from divulging this information to high risk patients due to patient confidentiality laws. Consequently, those estranged from a family member may be non-the-wiser to the threat they could face.

As part of the study, invitations for discussions on predictive tests were sent directly to selected families - a procedure usually left to family members. Offering genetic testing directly doubled uptake in men and increased uptake in women by 50 per cent. The results confirmed that a direct approach reached a wider audience than the current law allows. Many individuals, who may previously have been unaware of the threat, requested a genetic test, allowing them to consider preventative measures.

Breast cancer is the most common form of cancer affecting women today, with one in 10 women developing the disease. Five to ten per cent of cases are linked to the presence of inherited genes. Currently between 50 and 60 per cent of women who are aware that they carry or could carry these genes opt for preventative surgery. This suggests that a significant number of lives could be saved by a more proactive approach.

Professor Evans, of The Genesis Prevention Centre in Manchester, stated: "The current method of communicating increased breast cancer risk has too many loopholes. Leaving communication to the family means that many people are not informed of the possibility of testing or are informed in such a way that discourages them from considering it. Confidentiality laws must be adjusted to prevent women contracting this terrible disease - current laws are directly hindering the prevention of breast cancer."

Colette McCloud, from Runcorn, developed breast cancer in 2006 at the age of 31. Her estranged father failed to inform her of a gene fault in the family that had been established more than ten years previously. Colette said of the current laws: "It would have been extremely easy for my doctor to inform me that I could be at high risk of developing breast cancer. I don't speak to my father and I contracted breast cancer at 31 as a direct result of these restrictive laws. I'm extremely angry that doctors were powerless to inform me that I was at such high risk of this life threatening illness. These laws desperately need to change." The Genesis Appeal has helped fund the Genesis Breast Cancer Prevention Centre, which is Europe's first ever, purpose built centre of its kind. The £14 million state-of-the-art project - based at Wythenshawe Hospital in Manchester - brings together internationally recognised medical experts and will house ground breaking work into diagnosis, education and research into the prevention and treatment of breast cancer.

Notes

- Article abstract available at the Clinical Genetics journal website.

- For more information about The Genesis Appeal and The Nightingale Centre and Genesis Prevention Centre see: http://www.genesisuk.org

- During the research, BRCA1 presymptomatic genetic testing was offered to 100 individuals in 2 generations of 5 large BRCA1 families compared to service testing of 196 families since that time. Around 1 in 500 people carry the gene mutation and give a lifetime risk of breast cancer in women of up to 85-90%.

- Gareth Evans in a consultant in medical genetics at St Mary's Hospital and Christie Hospital in Manchester. He is also chairman of the Cancer Genetics Group and Council Member of the British Society of Human Genetics.

The Genesis Appeal