Breaking the Curse of Genomic Insurance Discrimination

In the last article of a three-part series about the recent developments in the use of genetic testing in life insurance, CEO of Humanise Health, Krystal Barter shares her personal journey with genetic testing in life insurance. 

My life has always felt like it was mapped out for me

I grew up surrounded by sickness – breast prosthesis, scars, and family cancer stories… I grew up in a family where you grow breasts, ovaries, and cancer. My mother, grandmother and great-grandmother had all developed breast cancer at a young age (mum at just 36).  No woman on my maternal side had ever been spared. It was like a kind of death lottery, we just didn’t know when our number was up, but science gave me some answers and, most importantly, a ticket to hope.

Because of advances in genetic testing, in 2000, my Mum was tested and found (as we suspected, there was something more than just being unlucky) she carried the gene variant BRCA1.

Everyone has BRCA genes

Normally, the BRCA1 and BRCA2 genes protect you from getting certain cancers. But some variants – or mutations – in the BRCA1 and BRCA2 genes prevent them from working properly. If you inherit one of these variants, you are more likely to develop breast, ovarian, and other cancers.

At the age of 22, a few years after my Mum was tested, I made the decision to get tested for myself.  

I felt so lucky in that moment to be the first one in my family to be able to determine whether I carried the gene variant before getting cancer. I thought, in some small way, it was my duty to give hope and a chance to change our destiny as a family. Plus, I was a mum and had young babies who needed me.

But the decision weighed heavily on me. Not because of the information that would come from it, but because of genetic life insurance discrimination.

You see, when my genetic counsellor took me through the decision to have genetic testing, she explained that genetic life insurance discrimination was one of the things I needed to consider. Adding in the shadow of insurance discrimination provided an unnecessary barrier on top of an already stressful time for my family, and no doubt many other families.

But the desire to be in control of my health, and to be able to take preventative steps to reduce my risk of an early death or sickness meant I had to take the gamble and test.

I tested positive for the BRCA gene variant. A moment in time. It was just a simple blood test and yet it gave me so much responsibility for my family, myself, and my health.  

After navigating my options, I decided to undergo a preventative double mastectomy at 25 and a hysterectomy at 31. It wasn’t easy, but it gave me an opportunity to mitigate my health risks – a gift when compared to what my family had been through. It was knowledge that I wanted to share with others and a new purpose to change genetic insurance discrimination for my children.

And so, our advocacy began

It started with an article... an emotional op-ed I penned for ABC titled,

“I am destined to get cancer, but I don’t deserve discrimination.”

It was a plea for fair treatment and the protection of consumers from genetic life insurance discrimination. 

That led to the A-Glimmer Report – a catalyst for government to listen and act by Dr Jane Tiller and Monash Health.

And, finally, to the government’s response on 27 November 2023 where Minister Stephen Jones opened consultation to consider options addressing the use of genetic testing by life insurers.

Now it’s up to us

We can all play a part in improving the health of Australia and creating a system that is fit for all the incredible opportunities that science unlocks for us. This is a chance for us all to work together to find a long-term solution to this important issue. One that will bring us up to speed with our counterparts in Canada and around the world.  

It is a chance for us all to shape the history of this country’s healthcare system and consumer protection. We cannot afford to squander this moment. For our children and for ourselves.

Just think: one day, in the future, you or someone you love may be faced with the choice of taking a genetic test.

My hope is that you will feel able to take it without hesitation because the hard work will have been done by all of us. 

You will be protected, just like others around the world are protected now. There will be no difference.

This is your chance to write your name into history. To be part of such a seismic shift for improving genomic healthcare and consumer protection in this country. To be able to say, “I did the right thing for the future of this nation.” 

So, I hope in 2024…

I will be adding one extra celebratory moment to my year when I get the call to say, “It’s done”.

I will look at the sky with a glass of bubbles in hand and say cheers to every woman in my family who is no longer here. I will then go inside and hug my children and know I have done my bit to make their story, and future, better.

Over to you, Australia.

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