A parliamentary inquiry in Australia is examining the impact of life insurance discrimination based on genetic test results.
Under current law, genetic testing could result in increased life insurance premiums or exclusion from life insurance coverage altogether. This differs from rules governing health insurance which protect patients from such discrimination.
'There is a concerning lack of regulation over the use of genetic information by the Australian life insurance industry,' write Public Health Genomics scholars Jane Tiller and Dr Paul Lacaze of Monash University in Melbourne, Australia in The Conversation. 'Insurance companies are allowed to use genetic test results to discriminate against applicants for life, permanent disability, and income protection insurance (which all come under the life-insurance product category), with little independent oversight or consumer transparency.'
Whether a genetic test is obtained clinically or from a private company (also known as 'direct-to-consumer' genetic testing), life insurance applicants are obligated to disclose their genetic test results if their insurer requests it. And if the test results contain information that shows a patient possesses a genetic disease or a gene that puts them at higher risk of certain diseases, patients risk losing coverage even if they take preventive health measures.
The fear of losing coverage, according to Tiller and Dr Lacaze, is causing more Australian patients to turn down genetic testing, even in clinical settings where results could be used to treat or prevent disease.
A 2009 study conducted by 13 Australian-based researchers showed that twice as many patients with family history of bowel cancer declined genetic testing after being advised of the potential effect on their life insurance coverage, compared to the number who refused testing without being advised of the insurance risk.
Dr Louise Keogh of the University of Melbourne, lead author of the study, told the Sydney Morning Herald: 'It does put people off from getting genetic testing. It's not everybody, but there is a sub-group for whom it is a deal-breaker and they are not interested in getting genetic testing while they know that it will impact their life insurance.'
In Australia, the life insurance industry is largely self-regulated. By contrast, many other countries heavily restrict or prohibit the ability of insurance companies to discriminate based on genetic test results.
According to Tiller and Dr Lacaze, as genetic testing becomes more widespread, Australians will need greater consumer protection: 'The Australian government must take action towards an immediate ban (moratorium) on the use of genetic test results in insurance, until adequate long-term regulation is in place.'