Our guiding principle is that we don’t think you should be penalised for being proactive in managing your health. This is why we think it’s important that the Government imposes a complete ban on life insurers using genetic testing to deny people cover.To do that, it’s important to demonstrate to the Government why a partial ban (with limits, caps or exclusions) is problematic.  

Even if you have never had genetic testing or thought about it, your views on whether a ban on genetic discrimination are really important. You can simply write to the government and let them know that you support a total ban, without any exclusions or limits. You never know when you might be the one considering genetic testing for yourself, your children, or another family member. 

In your submission, you might include some of the following points: 

• A total ban will solve the problem once and for all, whereas a partial solution that only provides partial protection to consumers will "kick the can down the road" - leaving a problem to be solved still. 

• A total, permanent ban will provide certainty - consumers won't be worrying about when the protection might change/run out, or whether it will still be there in the future when they might actually need to take out life insurance.

• A partial ban would still allow insurers to use results in some situations, which means that consumers will be nervous about what insurers will do with their data, and whether they will only use it in the way the rules allow them to or not. 

• Consumers also won't be clear on whether they have to give insurers their genetic data or not, meaning insurers can try to use data that they have obtained through consumers being unclear about the rules and giving it to them "just in case. A total ban means that consumers can be confident that their data does not have to be disclosed in any circumstances.  

• A partial ban, or something with limits or caps, would require consumers to understand the nuances, exceptions, or limits fo what can be complex financial law. A partial ban that changes over time would cause constant uncertainty and confusion about what the current state of protection was. A total, permanent ban is easy for consumers to understand, and easy to educate the public about over time.  

• Under a partial ban, the genetics workforce, who should be speaking to people about health information, would also have to understand these financial laws, to be able to explain them to people and essentially have to give them "financial advice". This is not the role of genetics professionals, and not what people want to be weighing up in their genetics appointments. A total  ban would take genetics 'off the table' and allow decisions about genetic testing to be made based on health information only, not decisions about future insurance access. 

• A complete ban would be consistent with the Genetic Nondiscrimination Act introduced in Canada in 2017. It would also be consistent with the recommendations made in Monash University's report released in June 2023. 

EXAMPLE SUBMISSIONS

Below are two example submissions. We strongly suggest you do not copy/paste these example submissions directly, as the government wants to hear your words and views directly from you. However, it might give you some ideas about the types of things you might write.

Example 1 

"I am 25 years old. I have never done genetic testing and I don't have any strong family history of genetic disease, but I am a big fan of preventative health. I want to be involved in a genetic research study that might give me information about genetic risks for conditions that I can prevent or treat early. But when I read the consent form, I found out that this genetic information can be used by life insurers in the future to deny me cover or increase the cost of premiums. I don't want to risk my future ability to get life insurance, so I decided not to be involved in the research. I am so happy to see that the government is finally considering banning this like other countries have. I really hope that the government introduces a complete ban, like they did in Canada, so that people like me have the comfort we need to be involved in genetic research and testing without worrying about being discriminated against. I understand the government is also considering a partial ban with some exclusions or limits. This makes me feel really nervous, as it makes me think insurers might still get my data and use it against me. I would only really feel reassured if the ban was complete and permanent, so that I wouldn't worry about it changing in the future or about how insurers might discriminate against me by getting my data and using it somehow."

Example 2

"I am 37 years old. My cousin recently found out she has a BRCA1 variant, which means her risk of breast and ovarian cancer is very high. It's on my dad's side of the family, so dad got tested and he has the variant as well. This means I am at 50% risk of having it too. I have been deciding whether or not to have the testing. Although knowing about my risk would allow me to have high-risk screening for cancer and to consider preventive surgery and other measures, I also know that this will interfere with my ability to get life insurance in the future. It's not fair that I would be penalised for being proactive about my health and finding out about this information. During my genetic counselling appointment where I discussed this option, we spent far too much time focussing on the possible insurance outcomes. I want to be making decisions about my health, not about insurance. I strongly believe the government should ban life insurers being allowed to use my genetic results to discriminate against me. I didn't choose my genes, but I can choose to be empowered by this knowledge. But insurance discrimination is completely disempowering. If the government put a total ban in place, I would feel much better about having this testing. A ban that was only partial would leave me still feeling unsure and worried about the future and the possible issues with insurance. I really want a complete ban so I can move forward with my preventative health decisions without having to worry about life insurance limitations at all".