Legislative Assembly Hansard – 6 February, Genetic Discrimination

GENETIC DISCRIMINATION

Mr JUSTIN CLANCY (Albury) (19:43): "What advice do I give my children?" Kristie Ivone, a breast cancer survivor living in Albury, raised that question with me recently. Quoted inThe Border Mail, Kristie said, "The cruel irony is that having the gene I carry lends itself to developing breast cancer younger, before the regular mammogram screening kicks in." How early in life does the family have this difficult discussion of mortality, treatment, early intervention and eligibility for life insurance? Many nations have been tackling this issue over the last couple of decades. In Australia, genetic discrimination in life insurance underwriting is legal. Section 46 of the Commonwealth Disability Discrimination Act 1992 enables insurers who risk rate their policies to discriminate on the basis of both predictive and diagnostic genetic test results where this decision is based on actuarial or statistical evidence.

Life insurance products, excluding default cover through superannuation, are risk rated. The principle is that the insured must disclose what they know about their health and their family medical history if it might affect their individual risk. Early intervention might save lives, reduce trauma and lead to positive lifestyle changes. What is perhaps not well known is that these issues have been with us for over a decade. Responding to concerns, in 2019 Australia's life insurance industry, through the Financial Services Council [FSC], introduced a partial moratorium on the requirement to disclose genetic test results.

FSC Standard 11 ties disclosure by the consumer to levels of benefit. For example, you would not need to disclose a genetic test result to your insurer when lump sum death cover did not exceed $500,000 or benefit per month under any combination of income protection, salary continuance or business expenses policy did not exceed $4,000. A Federal inquiry into these issues is currently underway, with public submissions having closed on 31 January. The constituent who discussed these issues with me is now advocating for a total moratorium on any requirement to pass results of genetic testing to a life insurance company. She wants it to be mandated by law—as is the situation in Canada—and not managed through self-regulation by the insurance industry.

The Australian moratorium on genetics and life insurance: evaluating policy compared to Parliamentary recommendations regarding genetic discrimination by Jane Tiller, Paul Lacaze and Margaret Otlowski was published in December 2022. The researchers found inter alia that in Australia "people are not undertaking genetic tests or participating in scientific research due to concerns about obtaining affordable life insurance". They also found poor awareness and knowledge about the moratorium amongst some stakeholders and that not all life insurers were complying with the standard. The authors noted the Geneva Association document titledGenetics and Life Insurance: A View Into the Microscope of Regulation and said it:

… shows that most countries where bans exist have no financial limits at all. Of 20 countries it lists (other than Australia), 13 (65%) do not require disclosure of genetic results to insurers in any circumstances (with no limits) … Some countries (like Portugal) even ban the collection of family history information. Only four (20%) of the 20 countries have financial limits of any kind.

Research by Amy Fernando, Emma Kondrup and others published in January this year said:

… in jurisdictions where genetic test results are protected, such as France and the United Kingdom, there is no evidence of costs spiraling out of control …

The Commonwealth is running the review, but I encourage the State Government nonetheless to play a role advocating on behalf of New South Wales citizens for the best outcome, which now, more than ever, must involve government regulation and appropriate encouragement for our community to take full advantage of advances in research, diagnosis and treatment to ensure that opportunities for early intervention are maximised and every advantage is readily available for better health outcomes. When Kristie completed her round of chemotherapy she took her opportunity to ring the bell at the Albury Wodonga Cancer Centre to celebrate the achievement. Now Kristie is ringing bells elsewhere, making a healthy noise for reform of the nation's anti‑discrimination laws for genetic and predictive testing. May these reverberations shake things up.