It makes me mad I can't get insurance. I could get run over. There's more chance of that

Caroline Cox is a survivor, but many of her family have not been so lucky. Her grandmother and seven siblings - an entire generation - died of cancer. Her mother died of cancer. Caroline's own breast cancer was diagnosed while she was pregnant. Her baby daughter was delivered at 32 weeks in perfect health, but Caroline herself was not expected to live. "But I'm a fighter," she said.

Cancer runs in the family. Caroline, 44, has an inherited genetic mutation on the BRCA 2 gene, which predisposes her to breast cancer, and also increases the chances that she and those in her family who share it will develop ovarian, bowel or prostate cancer - and there is a slight increased risk of liver cancer. Thirteen years on, her battles are no longer with her health, but with the insurance companies.

She has been an insurance underwriter, so she knows the business, but it makes no difference. She cannot get life insurance because as far as the companies are concerned, her genes make her high risk.

"It makes me mad," she said. "I could get run over by a car. There is more chance of that because I am being monitored by doctors all the time. I could have a relapse and when I was first diagnosed they said I'd never survive if I got it again, but now I would because the chemo has changed so much."

After her cancer, Caroline took out a mortgage. An endowment mortgage was out, because it would have needed full life cover, but she was given a life insurance policy with a heavy premium, in which the amount of cover reduced each year. At that time, the BRCA 1 and BRCA 2 genes had not been identified.

By the time she had moved and remortgaged, the tests were available and the BRCA 2 gene had been identified as responsible for her cancer.

Because she had been treated for cancer, the insurance company wrote to her GP. When it found out about the gene test result, it refused her any insurance at all.

"I was out," she said.

Delyth Morgan, chief executive of Breakthrough Breast Cancer, said the attitude of insurance companies to people like Caroline could cause real anxiety. "Women with a high breast cancer risk face a huge dilemma when deciding whether or not to be genetically tested," she said.

"Our concern has always been that the added risk of exclusion from insurance would act as a strong deterrent to those who would benefit most."

But for Caroline the benefits of being tested are far more significant than the insurance downside. "I'd rather know than not know," she said.

"I'm under scrutiny now and so will my daughter. She's too young yet and I'm not allowed to decide for her, but when she is older it will all be explained to her and they will ask her whether she wants to be tested or not.

"It will be her choice. She will probably go for it. She's not scared at all."