Dr Jane Tiller, who is research co-lead of Monash University’s DNA Screen program, last night appeared on an SBS Insight program about DNA testing, which raises a number of issues around genetic testing.
Dr Tiller introduced DNA Screen, a pilot study of preventive genetic screening in young adults, for prevention of certain cancers and heart disease. This study, completed in 2024, tested 10,000 18-40-year-olds, finding over 200 at-risk individuals. Most of these were not eligible for publicly-funded genetic testing, and would have remained unaware of their risk if not for the DNA Screen study.
Dr Tiller was joined on the program by Sammi, one of the participants found by DNA Screen to have a high-risk BRCA1 variant. Sammi spoke of the power of receiving this life-saving information, and discussed her sister who has chosen not to have testing despite being at 50 per cent risk of having a BRCA1 variant, because of the life insurance implications.
Dr Tiller explained the ongoing legal right of life insurers to discriminate based on individuals’ genetic test results, and its impact on Australians’ willingness to have genetic testing.
Available to comment:
Dr Jane Tiller, Ethical, Legal and Social adviser in public health genomics, Monash University School of Public Health and Preventive Medicine
Contact details: +61 (0) 413 741 187, or [email protected]
Read more of Dr Tiller’s commentary at Monash Lens
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DNA screening
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The opportunities presented by genetic testing in adults for prevention of disease
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Legal and ethical implications of genetic testing in public health contexts
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Genetic discrimination in life insurance underwriting
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Public willingness to participate in DNA screening, and public barriers/concerns about testing
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DNA privacy and use of genetic information by third parties
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Sharing of genetic risk information with patients’ at-risk relatives
The following can be attributed to Dr Tiller:
“DNA screening to identify Australians at very high genetic risk of certain diseases like cancer and heart disease can save lives, enabling prevention, surveillance and early detection. We should be considering how Australia can offer screening to the whole population.
“The use of genomics in medicine remains largely restricted to diagnostic and treatment domains – we need to kickstart the use of genomics to prevent disease, saving lives and direct downstream costs to the healthcare system.
“Life insurance discrimination is the most cited barrier to participating in genetic testing and research in Australia. The Labor Government promised in 2024 that it would introduce a total legislative ban on this practice before the election. That wasn’t done, but given the bipartisan support for the regulation we are calling on the newly elected Labor Government to urgently prioritise drafting and introducing this legislation in the first 100 days of this term.”
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