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Fear of Losing Insurance Deters Genetic Testing for Bowel Cancer, Aussie Study Finds

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By Turna Ray

A population-based study conducted by Australian researchers at the University of Melbourne and Cancer Council Victoria found that the fear of losing insurance may cause some patients to decline genetic testing for certain conditions.

As in the US, while health insurers cannot discriminate based on genetic information in Australia, the law does not bar companies providing life and disability insurance from using such data to make coverage decisions.

The Australian study, led by Louise Keogh of the University of Melbourne's Key Center of Women's Health in Society, found that 50 percent of participants with a hereditary risk of bowel cancer refused genetic testing when informed of insurance implications.

In the study, published in the Medical Journal of Australia last week, researchers identified 106 people from 25 families in which there were genetic mutations that increased their risk of bowel cancer. These people were then offered the chance to learn their individual genetic risk information at a family cancer clinic.

"When we told participants about the life insurance implications of genetic testing, the number declining genetic testing more than doubled from 20 percent to 50 percent," Keogh said in a statement.

According to co-lead study author Christine van Vliet of the University of New South Wales, based on current Australian laws, genetic information has no implications for health insurance, but such information can negatively impact people's ability to obtain life, trauma, disability, and accident insurance policies.

"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," Vliet said in a statement.

In Australia, one in every 3,000 people carry a genetic mutation that places them at higher risk for bowel cancer, making it the second most common cancer for men and women, the researchers estimate.

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

Based on the results of the study, researchers are urging the Australian federal government and the country's insurance industry to consider genetic testing information as a means to reduce morbidity and mortality-related healthcare costs and not use it as a reason to deny insurance.

"Screening people at high genetic risk of bowel cancer is a highly cost-effective way to reduce deaths due to bowel cancer," Jenkins said.

"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," Keogh added.

The results of this study may have implication for US consumers.

After many years of being stalled in the US Congress, the Genetic Information Nondiscrimination Act of 2008 was signed into law last year by President George W. Bush. However, the law is very specific with regard to the types of genetic information it protects from health insurance and employment discrimination [see PGx Reporter 08-20-2008].

While GINA protects genetic information regarding people’s risk of developing a disease in the future, as well as genetic data for those who already have a genetic disease, the law does not protect information derived from diagnostic tests to personalize treatments for an already manifested illness. Furthermore, as in Australia, the US law does not offer protection against life insurance and disability insurance discrimination.

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