People with genetic risk of bowel cancer decline genetic testing

University of MelbourneSep 7 2009

An Australian study of families with genetic risk of bowel cancer has found that 50 percent of participants declined genetic testing when informed of insurance implications.

"This indicates that people have a significant fear of insurance discrimination which impacts their decision to have potentially life saving genetic testing," says co-lead author Dr Louise Keogh, of the University of Melbourne's Key Centre for Women's Health in Society.

The population-based study was led by researchers from the University of Melbourne and the Cancer Council Victoria, and published in the prestigious Medical Journal of Australia today.

Researchers identified 106 people from 25 families in which there were genetic mutations that increase the risk of bowel cancer. All were offered the chance to learn their own individual genetic information at a Familial Cancer Clinic.

"When we told participants about the life insurance implications of genetic testing, the number declining genetic testing more than doubled from 20 per cent to 50 per cent," Dr Keogh said.

"In Australia, while genetic information has no implications for health insurance, it can affect life, trauma, disability and sickness and accident insurance policies, "says co-lead author Christine van Vliet, School of Medical Sciences, University of New South Wales.

"However this is not the case in all countries. Since we know all people have some genes which predispose to disease, it is important that the Australian life insurance industry does not deter people from learning about their genetic risks," she says.

Bowel cancer is the second most common cancer for men and women in Australia. One in every 3,000 Australians carry a genetic mutation that places them at high risk of bowel cancer.

"For those at high genetic risk, screening for and removal of polyps reduces the risk of bowel cancer by more than 50 percent," says Associate Professor Mark Jenkins of the University of Melbourne's School of Population Health and senior author on the paper.

"Insurance-related apprehension about genetic testing could have troubling public health consequences. Screening people at high genetic risk of bowel cancer is a highly cost effective way to reduce deaths due to bowel cancer," he says.

Dr Louise Keogh says that now that we know insurance policies are adversely affecting health decision-making, it is time to act.

"We call on the Federal Government and the Australian insurance industry to look at what other countries have done and reconsider the use of genetic information where genetic testing has the potential to reduce morbidity and mortality," she says.

People with a strong family history of bowel cancer and concerned about the possibility of having inherited a high risk can obtain a referral from a GP to visit a Family Cancer Clinic.