I want to stop being discriminated against because I have the BRCA2 gene

Mia, a 20-year-old university student, took this test to save her life. But it now means she is being discriminated against.

Mia is only 20 years old but already she knows she’s going to be discriminated against.

She has one of the most commonly inherited gene mutations – BRCA2 – which increases the risk of breast, ovarian and prostate cancers.

Mia tested positive to the genetic mutation after undergoing genetic testing in September 2023.

More than seven other family members, including her father all tested positive to the cancer-causing gene.

But, like many other Australians in her position, she will have to disclose to life insurance companies that she has undergone genetic testing despite fears this might affect her premiums or prevent her from accessing certain coverage.

Assistant Treasurer Stephen Jones announced in September the Labor government would legislate a ban on life insurers taking part in this practice, which has led many patients to avoid screening entirely.

Mia has slammed the federal government for the delay. Picture: Mark Stewart

Health groups and advocates are now calling on the federal government to follow through on the promise, saying the lack of progress on the legislation had impacted patients for early detection, prevention and treatment decisions.

Mia said it was unconscionable that people were choosing between their health and their financial future.

“This is quite frankly a slap in the face to patients and advocates,” she said.

“When the ban was announced in September, we had hope. But now this has now been taken away from us because of inaction.”

The 20-year-old university student said finding out that she had the BRCA2 gene helped her immediately take “life-changing” measures.

The 20-year-old is going ahead with a risk-reducing prophylactic mastectomy. Picture: Mark Stewart

“I’m going ahead with a risk-reducing prophylactic mastectomy,” she said.

“I recognise the economic privilege that I hold to undergo genetic testing and to have that knowledge through the testing to give me an answer of what my future would look like.

“Whereas other people will have to hold off on it. They’re choosing between their health and their wealth.”

Mia said her father, who found out he was a BRCA2 gene carrier in 2006, was recently diagnosed with prostate cancer.

“Because he knew he had the gene mutation, he has been getting prostate screenings every year since he was 40,” she said.

“As soon as his PSA scores weren’t right, we could tell there was something wrong and then we could go straight into MRIs and biopsies.”

She said her aunty, who lived overseas, had died from breast cancer.

“My aunty was also a gene carrier … To my knowledge, I’m the only positive female gene carrier in my family who is still alive.”

“No Australian should have to feel that they’ve been discriminated against and have their future taken out of their hands because of broken promises and greed.”

Monash University’s public health and genomics researcher Dr Jane Tiller said discrimination fears continued to affect Australians who were making critical health decisions that could save their lives.

“I’ve heard from many clinicians that people have delayed genetic testing, relying on the government’s promise that the ban would be legislated before the 2025 election,” Dr Tiller said.

“This delay could cost lives, and the government must act.”

Mr Jones said he last year announced for the legislation to be introduced as soon as possible.

“Genetic research is constantly evolving so we need to ensure our legislation captures the intent of our decision and does not have unintended consequences,” he said.

“While we work as quickly as possible to get this right, there is nothing stopping life insurers from moving voluntarily.”

Originally published as I want to stop being discriminated against because I have the BRCA2 gene