Every day, the papers are filled with stories of new scientific research – whether it’s a miracle cure for a disease or a new weight loss quick fix, we’re bombarded with numerous pieces of information, which can often conflict with one another.
In 2014, our professor of clinical genetics, Gareth Evans, coined the term the ‘Angelina Effect’, which highlighted how the Hollywood actress’ decision to undergo a double mastectomy to remove her breasts and later her ovaries had driven a surge in women coming forward for genetic testing.
As a carrier of a mutated BRCA1 gene, Angelina’s lifetime risk of breast cancer was up to 87 per cent, while her risk of ovarian cancer was 50 per cent.
The star’s experience triggered a huge increase in the number of women asking for genetic testing. Importantly, these women were those who did have a family history of the disease and had perhaps put off the tests, but felt inspired by Angelina’s story, proving that the rise in the number of tests was not simply a ‘knee jerk’ reaction.
A year later, further figures proved that the Angelina Effect was long-lasting as we recorded a clear increase in uptake of preventative double mastectomies among patients here at the Nightingale Centre in Manchester.
However, last week, the Daily Mail (http://www.dailymail.co.uk/health/article-4812864/Angelina-Jolie-effect-fail.html) published an article on research by the University of California Fielding School of Public Health into breast cancer risk, which suggested that up to 1.3 million of women who had a high chance of carrying genetic mutations had not considered testing, despite it involving just a saliva or blood sample.
In the study, published in the Journal of Clinical Oncology, researchers found that just over 20 per cent of those who had breast cancer were advised to undergo the test, and only 15 per cent had taken it.
Under one per cent of women in the survey had had ovarian cancer. Of them, only 15 per cent discussed the genetic test with a health care provider, 13 per cent were advised to undergo the test and just over 10 per cent had taken it.
While we cannot argue with these figures and that there is a definite discrepancy in the number of women undergoing testing, the real issue here is that doctors did not sufficiently discuss the tests with their patients, or that the women forgot they’d been offered advice. This is completely different to them simply ‘shunning’ the tests.
Here in the UK, criteria for testing are more stringent as only those with certain types of breast or ovarian cancer have it ‘offered’ to them, sometimes regardless of family history. Our own experience shows that women with specific types of breast and ovarian cancer are being offered the tests and taking them up.
We should remember that women in America don’t have a healthcare system like ours and are often concerned about how a genetic fault could affect their health insurance.
It’s important that when studies such as this are released, they are validated by a UK medical professional to bring context and a sense of reality, avoiding unnecessary scaremongering.
For more information about genetic testing and family history, contact us: firstname.lastname@example.org