Government opens up consultation on the use of genetic testing amid concerns

ABC NEWS (Australia)

The Albanese government has opened up consultation on addressing the use of genetic testing by life insurers. The Disability Discrimination Act currently provides an exemption for life insurers to use genetic test results to determine the rating of life insurance premiums. Genetic testing can provide helpful health information and can prompt early screening and treatment. However, there are growing community concerns this information will be used to alter how much people pay for insurance. Assistant treasurer Stephen Jones says the government shares community concerns. Jane Tiller is the Ethical, Legal & Social Adviser at Monash University's public health genomics. She says this is a step in the right direction.

Transcript

00:00 We've been calling on the government to ban the use of genetic results in life insurance

00:06 for consumer protection and today the government has announced a consultation process.

00:10 They've set out several possible options that they might put forward and they are allowing

00:15 the public to write into them and to have some say in what they consider.

00:20 But certainly one of those options will be banning the use of genetic results completely

00:24 and that's what we very strongly are calling for.

00:27 And can you spell out the current situation for us?

00:29 Can life insurance companies use genetic testing to decline coverage, charge more money or

00:34 make exclusions on it?

00:36 They can do all of those things.

00:37 So there's currently an exception to the law that prevents discrimination on the basis

00:41 of genetic results that allows life insurers to use that information.

00:46 If someone has a genetic test that shows in the future they might be at a greater risk

00:49 of disease like cancer or heart disease, that's something that they can do something about.

00:54 They might be able to take preventive steps.

00:56 It's also something that a life insurer can use to increase the cost of their cover to

01:00 say we don't want to cover you at all.

01:02 And so people really take a second thought about that and people decide they don't want

01:07 to have testing often because they're worried about those financial implications.

01:11 Now the submissions will be accepted until the end of January.

01:14 As you say one option is a ban on the use of this genetic testing by life insurance

01:18 companies.

01:19 What are the other options on the table?

01:21 So the other options are to do nothing, which obviously we think would be a big shame and

01:26 I actually think the announcement that the Assistant Treasurer made today makes it clear

01:30 that the government is committed to moving on this.

01:33 But the other option is to put in place either a partial ban with some limits or exclusions

01:38 or to put in place a financial limit.

01:41 So to legislate a financial cap on the amount of insurance that people can get without disclosing

01:46 their genetic results.

01:48 Now as you've said you support a full ban, you have been advocating that.

01:51 Tell us about the research that helped you form that view.

01:54 Yeah, so we did work for three years with a number of different groups, with consumers,

01:59 with health professionals, with industry personnel and with patients and we asked them about

02:04 the impact this was having and they said that the uncertainty and the fear that this would

02:09 impact them and their family in the future was significant.

02:12 And so what we see is that a partial ban or something that only changes that for a small

02:17 amount of people will continue that uncertainty, that people will continue to be unsure about

02:22 what will happen in the future, that they'll not want to take out genetic, have genetic

02:27 results because they'll be worried that those limits will change or that the protection

02:31 will change or that there are things still on the table that won't be protected.

02:35 And we see time and time again when we ask people about how that will affect them that

02:39 they say that uncertainty is too much, it won't give me the confidence I need to have

02:44 a genetic test for my own health and it needs to be completely off the table.

02:49 And if a ban were to be implemented after this period, would there still be any concerns

02:54 about data leaks, any access to that that a company could have about someone's genetic

02:58 testing without them knowing that they have that data?

03:02 So of course we need to have strong privacy protections and this is something that Australia

03:06 is constantly looking at.

03:07 We don't have strong genetic privacy laws and this is something that I think we need

03:11 to work on.

03:13 But at the moment the way that insurers get this information is directly from the individual.

03:17 When you take out a life insurance policy, you're required to give them this information

03:21 because it's legally something they're entitled to.

03:23 So really the first step is to make sure we take away their right to have that information,

03:28 their right to demand that information from people and then of course we also need to

03:31 protect their privacy in making sure that they can't get that information in other ways.

03:35 And the state of play that we find ourselves in is Australians perhaps risking their health

03:39 not getting this testing and that comes as obviously a huge cost to them personally but

03:43 also the country as a whole.

03:45 People don't have genetic testing and then they have to be treated for cancer or heart

03:49 disease.

03:50 That's also a huge cost to the health system and we should consider that this is good for

03:53 the economy and for the health system as well.

03:55 Jane Tillo, the Ethical, Legal and Social Advisor at Monash University's Public Health

03:59 Genomics.

04:00 Thank you so much for joining us.

04:02 Thank you.

04:02 [BLANK_AUDIO]

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