00:01This is something I've been working on for almost 10 years, since 2016 when I moved into
00:06public health.
00:07This issue of genetic discrimination in life insurance has sort of been this black cloud
00:12that's been hanging over medical research and clinical genetic testing and medical prevention.
00:17And so what this bill does is actually ban genetic results being used by life insurance
00:22companies to discriminate against people.
00:25So until this law is passed, life insurance companies are allowed to use your genetic
00:29results to deny you cover, to increase the cost of your premium, or to put exclusions
00:35on your cover.
00:35And because of that, we have to tell people who are considering having a genetic test that
00:40they need to consider their life insurance implications.
00:42When we tell people that, many people say they'd rather not have testing.
00:46And we see it's the biggest deterrence of all of everything that stops people from having
00:52genetic testing when it could save their lives.
00:54Yeah.
00:55Could you take me through some examples of those genetic tests that people might have
01:00previously avoided and how crucial they can be to getting treatment?
01:07There are lots of things that we can now predict based on genetics in terms of diseases, and we
01:12can't predict everything.
01:13But there are certain genetic tests like for the BRCA gene mutation, which gives a woman
01:18a very high risk of breast cancer and ovarian cancer, an increased risk of prostate cancer
01:23for men.
01:24And if we do this genetic test when someone is in young adulthood, before disease happens,
01:29we can actually take preventive steps.
01:31And there are many genes like this for other types of cancer, for heart disease, for things
01:36that we can get ahead of if we know about them.
01:38If we don't do the test and we don't know about it, we're left waiting until someone
01:42suddenly has a cancer at a young age or has heart disease.
01:46At the moment, we do that testing reactively.
01:49But sometimes when people are offered this test before that happens, they decide not to
01:53have testing.
01:54And that can actually be the difference between life and death, between early detection and
01:59very late stage cancer detection, for example.
02:02And you had a participant based in Perth, I understand, who went through and had some of this testing
02:08done.
02:08And it has ultimately saved their life.
02:13At Monash Uni, we have a study called DNA Screen, which is really looking at how do we
02:17start using genetic information to prevent disease.
02:21And we're really starting to move into that population screening side of things where we
02:25say, let's offer this to people to find high risk people to prevent disease.
02:29And the biggest reason people in the DNA Screen study didn't have testing when they were interested
02:34was because of life insurance.
02:35But one participant, Zoe, actually was 29 when she had her testing.
02:40She was found to have a variant in the BRCA2 gene.
02:43And she had her first breast MRI just before Christmas.
02:47And that showed that she had a very early stage breast cancer.
02:50So of course, it's awful news when we find out that someone's been detected with breast
02:55cancer.
02:55However, Zoe was always going to get that breast cancer.
02:58And if not for our study, we would have found that probably at stage four when it was very
03:03advanced and very significantly costly and difficult to treat.
03:08Because of our study, we were able to find that at stage two, she's had a double mastectomy.
03:13Hopefully, she won't need any chemo or any radiotherapy.
03:15And we hope that that means that she'll be able to live a normal, healthy life rather than
03:21having a really devastating stage four cancer diagnosis.
03:25Legislation like what has passed today has been in place overseas for quite some time, hasn't
03:32it?
03:33Why is Australia so far behind in implementing these sorts of changes to insurers?
03:41This is something that people in overseas jurisdictions have looked at many years ago.
03:45Now, not every country has actually acted to ban this in the way that we have now done in
03:50Australia, but countries like Canada, almost 10 years ago, they passed legislation to ban
03:57all insurance companies and other entities from discriminating on the basis of genetics.
04:01We actually have some laws that have been in place, for example, health insurance companies,
04:06they can't discriminate on the basis of genetics or other risk.
04:10And we have some laws in place that do prevent against discrimination.
04:13But our law has actually for a long time had a special carve out that specifically allows life
04:19insurers to discriminate based on risk. And because of that, this isn't something that has been
04:25looked at or dealt with. Ten years ago, I started looking at this and saying,
04:28we are behind now in Australia, we need to catch up. And it's taken all this time
04:32for us to finally get here to a bill that's actually been passed.
04:36So thank you very much.
Comments