According to new research by leading research charity, Ovarian Cancer Action, a quarter of women say they would choose NOT to be tested for the BRCA gene mutation (which can lead to both breast and ovarian cancer) if one of their family members had been previously diagnosed with the disease.
The research, which has been released for Ovarian Cancer Awareness month, shows that whilst a family history of breast and/or ovarian cancer may indicate that there is the presence of a BRCA1/2 mutation, which increases the risk of getting ovarian cancer from one in 54 to one in two, many women preferred not to know or would be too scared to have the test.
Furthermore, almost one in 20 women would refuse to inform other family members if they (or another family member) carried the BRCA gene - believing it was not their place to tell someone or not wanting to frighten them. Knowledge about family history and someone's BRCA status is crucial in order for their families to be tested and, if necessary, opt for risk reducing surgery to prevent developing ovarian and breast cancer.
The study, released as part of Ovarian Cancer Action's new 'Right To Know' campaign, also revealed that almost one in three women (30%) confirmed they have a family history of breast or ovarian cancer, yet almost 40% admit they have not taken any action. Only 6% have had a BRCA test after finding out they had a family history of ovarian cancer.
More than one in 10 respondents are unaware that a family history of breast and / or ovarian cancer can increase the chances of developing ovarian cancer, while just under a third (30%) are unaware that having the inherited faulty BRCA gene is known to increase the risk of breast & ovarian cancer.
Whilst the research has shown reluctance among the women surveyed to be tested for a BRCA gene mutation should they have a family history of breast and/or ovarian cancer, 97% of women think those who have had ovarian cancer should have automatic access to BRCA testing.
The message for ALL women, especially those with a significant family history of either breast and/or ovarian cancer, is to be 'BRCA aware' by checking out their family medical history. It could save their life.
Katherine Taylor, acting Chief Executive of Ovarian Cancer Action, said: "Of course knowing that you're at greater risk of developing cancer can be frightening but the benefits of knowing far outweigh a temptation to bury your head in the sand. Not only could knowing save your life - by enabling you to take preventative measures or spot warning signs before it's too late - it could also save the lives of your family members who may have inherited the gene too. All women have a right to know whether they carry this genetic gene and that's why we're campaigning for automatic BRCA testing at point of diagnosis."
Known as the most deadly gynecological cancer - ovarian cancer kills one woman every two hours here in the UK and with more than 7,000 new UK diagnoses each year. 31% of ovarian cancer patients in the UK are diagnosed each year through an emergency route.
There's currently no screening tool for ovarian cancer and symptoms are often confused, by both women and doctors, for other conditions. Of the women surveyed, more than half were unaware that persistent stomach pains and bloating could be a sign whilst 33% of women explicitly said they don't know of any symptoms associated with ovarian cancer.
The charity is also launching its BRCA Risk Tool - an online risk calculator www.ovarian.org.uk/brcarisktool - designed to help people explore their family history and make more informed choices about whether BRCA1/2 testing should be considered.
Since 2013, Ovarian Cancer Action has been campaigning for women with ovarian cancer (not just those with a family history of breast and ovarian cancer) to be routinely BRCA tested at the point of diagnosis so they can access the right treatment.
At present there is no routine testing for women with ovarian cancer, but up to 17% of women will have a BRCA mutation. Knowledge of a patient's genetic make-up can have a direct impact on their treatment path, their responsiveness to drugs and their potential to access clinical trials. It is also vital information for their families who can be tested and, if necessary, opt for risk reducing surgery to prevent developing ovarian and breast cancer.