Australia’s Fight Against Genetic Discrimination
Imagine being denied health insurance simply because your genes suggest you might develop a certain disease. It sounds far-fetched, right? You might not even realise we have the technology to assess such risks. But for many Australians, this has been a harsh reality — until now.
Last week, an important law was passed to protect citizens from genetic discrimination, ensuring that no one is judged by their DNA.
What is genetic discrimination?
Genetic discrimination occurs when individuals are treated unfairly based on their genetic makeup, especially in areas like employment and insurance. It takes advantage of genetic test results, which can show changes in genes, chromosomes, and proteins, which can discover the underlying causes of certain conditions or traits.
Advances in genetic testing have made it easier than ever to predict a person’s risk of developing certain diseases, such as cancer or neurological conditions. The cost of genome sequencing has decreased dramatically since the Human Genome Project completed the first human sequence. While this genetic information is incredibly valuable and it is exciting that it is becoming more accessible, concerns have been raised that insurance companies might exploit it.
In Australia, until recently, insurers were legally allowed to use genetic test results to assess someone’s risk profile. This meant that individuals with a higher genetic predisposition to certain diseases could be denied coverage or forced to pay inflated rates.
A Fairer Australia
Last week, the Australian federal government announced that life insurance companies will no longer be able to discriminate against people based on the results of predictive genetic testing. This decision is aimed at encouraging more people to take advantage of genetic testing for preventive health purposes without the fear of being denied life insurance.
Assistant Treasurer Stephen Jones revealed the details, emphasising that the change will give Australians the confidence to undergo genetic testing without affecting their financial security. As Jones put it, “This change will give Australians the confidence to undertake genetic testing without fear it will impact their ability to access financial security through life insurance.”
Why does this matter?
Before this law, insurance companies were exempt from strict discrimination laws, which would have prevented them from making it mandatory for someone to tell them if a genetic test has highlighted a predisposition for any disease or trait. But, with this new law they will only be allowed to ask you about previous medical diagnosis’, meaning if you actually have the disease you must inform them, rather than inform them of a risk.
This move brings Australia in line with other countries that have already taken steps to protect their citizens from genetic discrimination. In the United Kingdom, protections have been in place since 2001 where there was an agreement made between the UK Government and the Association of British Insurers (ABI).
Under this agreement, insurance companies are restricted from using the results of predictive genetic tests to influence most insurance policies, including health, income protection, and critical illness insurance. The only exception is for life insurance policies over £500,000, where insurers can ask for the results of a predictive genetic test for Huntington’s disease. However, you do not need to disclose this if the test was part of a study, you already have a policy or a family member/partner has had one.
Encouraging Early Detection and Treatment
This step forward is expected to encourage more Australians to engage with this new era of medicine and personalised genomics, promoting early detection and treatment for diseases. By removing the fear of insurance penalties, more people can take advantage of genetic testing to better understand their health.
The announcement of this new law aligns with the Albanese Government’s broader commitment to advancing genomic research in Australia. This builds on significant investments, including $66 million dedicated to genomic research and $5.5 million allocated for newborn screening of genetic disorders.
By combining investment in research with the consideration of protecting individuals from the exploitation of genetic information, this approach represents a positive step forward. It sets an example that other countries may hopefully follow in the future.
Do send us an email at info@genomes.io should you have any questions on how Genomes.io fights against genetic discrimination.
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