Monique Ryan (Kooyong, Independent) Share this | Hansard source

I rise also to support this motion. Genetic information is now used routinely in patient care to diagnose conditions, guide choice and dosage of medications, and to assess our response to therapies. It can allow at-risk individuals to take preventive steps to reduce their risk or, in some cases, avoid developing diseases altogether. It has the potential to change all aspects of how we practise medicine, effectively, economically and compassionately—optimising prescribing, preventing side-effects and facilitating early diagnosis. But we have to have the confidence to engage with genetic testing to know that it won't cost us or our families the ability to insure ourselves either now or in the future.

Over the past two generations, we have experienced an extraordinarily rapid evolution in the scope and complexity of the genetic testing undertaken every day in the clinics and hospitals of this country. We've adapted quickly, and we've been able to remain at the forefront of the uptake of this technology, globally. The issue that we address today is that our life insurance industry can, though, at this point, legally use the results of genetic testing in a way which is actively discriminatory. When people fear discrimination by insurers, they avoid genetic testing. This fear causes delays in diagnosis and in preventive and curative treatment. It has a significant negative impact on patient outcomes.

My constituent in Kooyong, Professor Martin Delatycki, reported seeing this effect in the DNA Screen study, an MRFF funded population-level DNA screening pilot study which tested young people for genetic risk factors for cancer and heart disease. Despite having no family history of the disease, many young people declined to participate in that research once they discovered that its results could impact their ability to gain life insurance in the future. I, myself, was an investigator on a previous MRFF study which assessed the potential for ultra-rapid genomic testing for newborn babies with life-limiting rare diseases. The genetic counselling around that study, which was being provided to parents of babies who were critically ill, was more challenging because of the potential implications of those diagnoses, not just for the patients and parents but also for other family members. Imagine trying to deal with that sort of discussion when you have a newborn baby in intensive care.

In 2018 the joint parliamentary committee's inquiry recommended consideration of a moratorium and further legislative action limiting the use of predictive genetic information by the life insurance industry. In 2019 the Financial Services Council introduced a partial moratorium, restricting member life insurance companies from requiring applicants to disclose genetic testing results and from using those results for policies, but only below certain financial limits. This was an industry regulated policy. It had no government oversight. It was plainly inadequate, and the degree to which it has been enforced is unclear. A recent federally funded study assessing the effectiveness of that moratorium, the A-GLIMMER project, found that fear of genetic discrimination is still deterring individuals from having genetic testing in this country.

The easiest and simplest way to address this issue is via an amendment to the Disability Discrimination Act 1992. This act currently prohibits discrimination on grounds including genetic status but provides an exemption for risk rated insurers under its section 46. Amendments to remove that exemption as it applies to genetic results would be a simple and effective way of achieving prohibition without requiring a whole new standalone act, so I ask the Attorney-General to implement this important amendment in order to build public trust in genetics and genomics and to support best-practice medical care for all Australians. It is urgent that we do this now, when we're on the cusp of a time when DNA testing is becoming an intrinsic part of routine medical diagnosis and treatment.

I call on the Albanese government to address and prevent genetic discrimination in life insurance in Australia. Doing so will right wrongs. It will remove injustice and assist all Australians to access the world standard life-saving medical care that our medical system wants to provide and that Australians deserve. I commend the motion to the House.

See this speech in context