Insurance scandal over genetic testing

In his early 20s, James was denied full life insurance cover because he revealed that he had discussed genetic testing with a genetic counsellor, as his mother had bowel cancer and carried a gene mutation.

He was tested and found to carry a mutation in the MSH6 gene, one of the DNA mismatch repair genes in Lynch syndrome.

The genetics of Lynch Syndrome is well researched in Australia, with colon cancer not appearing till later in life, if at all. However, there is a clause in the insurance application where you have to reveal any genetic information or the insurance company can use the lack of compliance to throw out any future claim. After disclosing this, James was denied cover for life insurance by two other life insurance companies.

This rejection is totally unscientific, because if colonoscopy is performed every year, the likelihood of dying of colon cancer is basically eliminated. The insurance companies obviously had no information about the risks of disease and genetic testing.

James had scientific training so he knew there was no risk of his developing cancer after regular testing. James took his complaint to the Human Rights Commission and won. After informing a third insurance company that he had done so, he was offered full coverage.

In a similar case, Edwina Sawyer was denied life insurance by six companies after revealing she carried a mutation for Lynch syndrome. Sawyer said it also made it very difficult to get travel insurance with ridiculous loadings and premiums as it was considered a pre-existing condition.

A woman with a BRCA gene mutation, which is known to increase breast cancer risk, elected to have both breasts removed to reduce her risk. However, the consequent, significant risk reduction was not taken into account by the insurer. When she applied for death and critical illness cover, the insurer excluded any cancer cover and imposed a 50% premium loading for death cover.

Australian life insurance companies are technically required by law to justify decisions based on genetic results. Consumers have no way of requiring insurers to provide information about how decisions are made. However these examples show the insurance companies have not used any expert advice on genetic risk assessments.

Doctors can refer patients to a genetics service if they consider such tests might be of value due to family or personal history. The advantage of genetic testing is that the patient can take precautions and have medical procedures to reduce their risk. Also knowledge of familial genetic information can ensure the health of their children is safeguarded. But what right have insurance companies to access our genetic data? This should be a confidential matter.

A parliamentary inquiry into the life insurance industry is underway. It was supposed to report by June but it has now been extended to next March.

We are all inundated with emails and advertisements encouraging us to take out life insurance. But it is proving to be yet another scam.

There is a lack of regulation over the use of genetic information by the Australian life insurance industry. Insurance companies are allowed to use genetic test results to discriminate against applicants for life, permanent disability and income protection insurance. If this discrimination is allowed to continue, it will deter volunteers for genetic testing in research projects.

The Australian government allows the life insurance industry to self-regulate through the Financial Services Council (FSC). This essentially means the insurance industry writes its own rules on the use of genetic data, raising obvious conflicts of interest. Recently the FSC updated its genetic testing policy to suggest that insurance companies ask applicants if they are considering having a genetic test. This is an even worse situation.

Canada and Britain have protected consumers by restricting or banning the use of genetic information for insurance altogether. In Britain, a moratorium established in 2001 sets out an agreement between the government and the insurance industry not to ask for, or use, genetic test results, except for Huntington’s Disease for policies worth over £500,000. There is no known cure for Huntington’s Disease and if present the disease will eventually occur.

Many European countries, such as Belgium, Austria, Denmark, France, Germany, Lithuania, Norway, Portugal and Sweden, have implemented outright bans in accordance with the Council of Europe Human Rights Convention.

The final report needs to support an immediate ban on the use of genetic test results in insurance.

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