Josh Burns (Macnamara, Australian Labor Party) Share this | Hansard source

BURNS () (): I move:

That this House:

(1) notes:

(a) the field of genetics has great potential to improve medicine and public health through enabling diagnosis, prevention and early treatment of disease;

(b) that increasingly, genetic information is used in routine patient care to identify individuals at risk for medically actionable conditions, and early knowledge of this risk can allow at-risk individuals to take preventive steps to reduce their risk or, in some cases, avoid developing the associated disease altogether;

(c) the current ability of the life insurance industry to legally use genetic test results in underwriting can lead to discrimination;

(d) that insurance discrimination fears can also act as a barrier, by deterring people from having potentially life-saving genetic testing that could match them to tailored interventions and treatments, as well as from participation in genetic research; and

(e) that numerous other countries have prohibited the use of genetic test results to discriminate against individuals in insurance underwriting;

(2) acknowledges that:

(a) in 2018, the Joint Parliamentary Committee on Corporations and Financial Services' inquiry into the life insurance industry made recommendations relating to the use of genetic test results in life insurance underwriting, including consideration of a moratorium and potentially further legislative action or another form of regulation banning or limiting the use of predictive genetic information by the life insurance industry;

(b) in 2019, the Financial Services Council introduced a partial moratorium restricting member life insurance companies from requiring applicants to disclose or using applicants' genetic test results for policies below certain financial limits, which is self-regulation by industry with no government oversight; and

(c) the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project was funded by the Government from 2020-2023 to investigate effectiveness of the moratorium as a regulatory solution to genetic discrimination in Australian life insurance, and found that discrimination fears continue to deter individuals from having genetic testing, and that the moratorium is inadequate to address and prevent genetic discrimination in life insurance;

(3) recognises the invaluable work of Dr Jane Tiller, Project lead, Monash University, and the investigator team in preparing the comprehensive A-GLIMMER Project report, as well as the project's collaborators, patient/consumer and supporter groups, and the many individuals who participated in the research studies completed as part of the project; and

(4) calls on the Government to consider policy changes to address and prevent genetic discrimination in life insurance and assist patients in receiving lifesaving medical care.

I am pleased to rise and speak on this important motion. Many common illnesses, including potentially life-threatening ones, are strongly influenced by genetic factors. It has long been common knowledge that some medical conditions such as cancer, stroke and haemophilia tend to run in families, and we now know that this is due to a genetic susceptibility to a particular disease being passed from one generation to another. This means that it is possible to determine whether a person is likely to be susceptible to a particular condition by means of genetic testing.

Advances in medical technology and decreasing costs have resulted in a rapid expansion in the scope, ability and use of genetic testing. Once at the frontier of medical research, this technology is set to become part of mainstream health care if it hasn't already done so. This means, for example, that it is possible to screen women, particularly women with a family history of breast cancer, for mutation of the BRCA gene which gives rise to the breast cancer type 1 susceptibility protein and increases the risk of breast cancer. This allows pre-emptive measures to be taken which will reduce the likelihood of that risk becoming a reality.

This technology has the potential to save many lives and it should be welcomed, but, in the case of genetic testing, the issue raised is the possibility of discrimination against people found to have a genetic predisposition to a particular medical condition. The motion before us today discusses one particular issue: the impact of genetic testing on the availability of life insurance—specifically, the fact that a positive genetic test may result adversely in a person's ability to secure a life insurance policy.

Currently, life insurance companies can legally require applicants to disclose all genetic test results. No doubt, this seems reasonable to the insurance companies, but it does raise some serious issues. First, it enables insurers to decide what a particular genetic test result means in terms of risk. Given the lack of data for many genetic conditions, this will result in insurers taking a more restrictive attitude to medical evidence warrants. To take the example I gave above, it may well lead to an insurer refusing to cover any woman who carries the BRCA mutation. Second, insurers are not required to give the reasons for their decision to decline insurance or charge higher premiums. Currently, the insurance policy is developed by the Financial Services Council, with no government oversight or transparency to consumers. There is currently no easy process for individuals to challenge adverse decisions. Third, and most importantly, there is an increase in evidence that fears of life insurance discrimination are deterring people from having genetic testing that could literally save their lives.

In 2018, the Parliamentary Joint Committee on Corporations and Financial Services made bipartisan recommendations supporting a ban on the use of genetic results by life insurance and suggested a watching brief by government to consider whether legislation would be required. The industry introduced a partial moratorium in 2019. Despite this, it is my belief that stronger intervention is still required, one which will provide protection that cannot arbitrarily be removed by the insurance industry. In particular, it is relevant to the community of Macnamara because the Ashkenazi Jewish community has a higher prevalence of several genetic disorders, and Jewish families across my electorate have the potential to greatly benefit from a ban on generic discrimination. This will allow people to make decisions about genetic testing on the basis of their health needs, not financial fears. This problem is already affecting many people.

In July, I met Dwayne and Judy Honor, who have two sons. When one son was tested and found to have inherited Judy's genetic predisposition to bowel cancer, he faced insurance discrimination despite taking preventive measures to avoid developing cancer. Her other son then made the difficult choice not to get genetically tested. The fear of being denied life insurance is leading people to run an increased risk of life-threatening diseases. Families should not have to make these choices. It is unacceptable to me, and I am sure it is unacceptable to many in this House.

Finally, I want to recognise the invaluable work of Dr Jane Tiller from Monash University, who is leading research and advocacy on this issue. I would not be standing here if it wasn't for Jane and her team, and I know that many other members feel the same. We don't want a situation where people are choosing between whether or not they get the lifesaving health care they need or whether they could potentially be discriminated against. We need to clean this up. I commend this motion to the House.

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