Women with a BRCA1 mutation have an 85% risk of developing breast cancer and a 65% risk of ovarian cancer.
For BRCA2 mutation carriers, the risk of ovarian cancer is 35% and 45% will develop breast cancer by age 70 according to Cancer Research UK.
Men with BRCA1 or 2 mutations are also at increased risk of developing breast cancer, but at a much lower rate. However for men, a genetic mutation in both genes has been shown to triple the risk of prostate cancer.
At present, the only available treatment to reduce this risk is surgery, which may include the removal of both ovaries and fallopian tubes, and/or both breasts and a proctectomy for men.
But while medical experts are available to treat cancer - which these people don't have - where is the support for those with a genetic mutation who still have to undergo major surgery?
"I suddenly felt terrified and extremely vulnerable," explained Caroline Presho, 41, to who found out she had a BRCA2 mutation in 2007.
"Every moment of my day was taken up reading about my risks and chatting to others that I found online who understood how I felt.
"I had a mammogram and an MRI and they showed shadows on both breasts - I was absolutely terrified that I was going to die."
Dan Reisel, clinical research fellow at the Institute for Women's Health at UCL is hoping to bridge the gap to support those with gene mutations.
Reisel is currently working with the team at the UCL Translational Research Centre, led by Professor Martin Widschwendter, towards the launch of a BRCA Research Clinic - BRCA PROTECT - in November, the goal of which is to broaden the range of therapeutic options for people with BRCA mutations.
The clinic aims to understand the causes of cancer development in women with inherited risk, in order to test new, less drastic preventative strategies.
"As the clinic coordinator, I have been working on this for the last two years. There is a whole team involved and the research behind it has involved many dozens of people."
Reisel explained the confusion and inevitable errors about the BRCA gene are often found in the media and beyond.
He explained: "BRCA is a gene that all of us have. It is part of the safety mechanisms that the body has to prevent errors when cells grow and replicate.
"A mutation in the BRCA gene is like an error in the spell check software of the cell. With the mutation, the gene works less well, and over time, copy errors can creep in.
"Yes, a BRCA1 mutation leads to a 85% lifetime risk of breast cancer and a 65% risk of ovarian cancer but what's more, they often get the kinds of breast and ovarian cancers that are the most difficult to treat.
"This is a big issue," he continued. "Mutations in the BRCA gene occur in about 1/800 people in Britain."
Work in the clinic
A key person in the research for this clinic is Caroline Presho. Presho has four children, Jack, 12, Rachael, 10, Toby, eight, and Kitty, two.
She told HuffPost UK Parents: "I was originally turned down for genetic testing by my GP who said that he didn't think I would have a BRCA mutation and that I should go home and stop worrying about it... which I did.
"It was only after my dad's death that we got a phone call from a geneticist who told us that my dad had gone for testing (in secret) and had tested positive for a BRCA2 mutation and it all surfaced again.
"He recommended that my dad's four daughters get tested. I went with my younger sister - we both tested positive for a BRCA2 mutation.
"I didn't really feel anything about carrying a BRCA mutation at the time as I didn't understand the implications as in 2007 nobody was talking about it."
Presho was 33 when she received the results and was told from the age of 35, she would be screened.
However, having read up on the internet about the risks of having this gene mutation Presho said she wanted the risk-reducing surgery straight away.
"I was referred for an ultrasound and the time I had to wait for it seemed like an eternity. The shadows were due to the time the tests were done in my menstrual cycle," she said.
"This only hardened my resolve to have a risk-reducing mastectomy and the healthcare professionals were very supportive of this and recommended this course of action."
In 2009, Presho had a risk-reducing bilateral mastectomy with immediate reconstruction with permanent silicone implants, saying her decision left her feeling "empowered".
After her surgery, she found an online forum - BRCA Umbrella - where she met other women also going through the same experiences as her.
She said: "I became very active on the BRCA Umbrella forums. In 2011, the founder of BRCA Umbrella decided she wanted to go back to 'normal' life and put her mutation behind her and I stepped in and took over."
In early 2015, Presho found out about the launch of the research clinic and has since dedicated her time to being part of the research team.
She wants those with the gene mutation to feel better supported, which is why she has joined Reisel during his presentations of the clinic as well as being an advocate.
"This is something dedicated to the high risk community that will provide answers for future generations - it may offer alternatives to surgery for my daughters so that they don't have to follow the same path I have," she added.
"It gives us hope that our children and grandchildren will have more palatable choices rather than having to remove healthy body parts."
Researchers are currently encouraging women to participate in the pioneering cancer research.
Women with a known gene mutation (for example, a BRCA1, BRCA2 or a Lynch Syndrome mutation), as well as those without any known genetic risk, are invited to take part in the study.
The aim is to recruit a total of 1500 women with BRCA1/2 mutations and 3000 women without such mutations.
Reisel explained: "Additionally, we are seeking their mothers, sisters, daughters and female cousins who have tested negative for the gene mutation, as well as women from the general population.
"Their contribution is absolutely vital if we are to understand who is at risk from these deadly cancers."
If you want to find out more or get involved, visit brcaprotect.org