Dozens of organisations want a legislated ban, not a pinky promise, on using results to guide life insurance policies.
Advocates including the AMA and the RACGP are calling for a prohibition on the use of genetic testing information for life insurance underwriting.
In 2019, the life insurance industry introduced a self-regulated moratorium, through the Financial Services Council, to minimise the use of genetic test information when assessing life insurance applications.
However, the constraints only applied to new policies under certain financial limits and are set to expire in June.
Following an independent investigation into the impacts of the moratorium, which found continued non-compliance by some insurers and widespread support for legislation to underpin the regulations, the Treasury commenced a consultation into the use of genetic testing in life insurance underwriting, which closed to entries at the end of last month.
Speaking to The Medical Republic, Dr Jane Tiller (PhD) said over 1000 members of the public and dozens of organisations had provided submissions to the consultation in support of a blanket ban.
Currently, life insurers are legally entitled to request the results of genetic testing in their underwriting.
While the moratorium encourages insurers not to request genetic information under certain financial limits, the policy is “unenforceable”.
“Really the issue is, overwhelmingly, people are worried about it,” said Dr Tiller.
“So for every person that might actually experience discrimination, if they tell all of their support group then there’s a pervasive idea not to get genetic testing.
“And people we know from our research are really concerned about the implications for their kids.”
Advocates want legislation, rather than a self-regulated moratorium, banning the use of genetic information by life insurers. This, Dr Tiller said, should help to avoid “uncertainty” and “complexity”.
She highlighted that health insurance was exempt from the effects of genetic information as there was no underwriting involved.
According to AMA President Steve Robson, the current setup discouraged patients from seeking genetic testing for fear of being iced out of life insurance cover if a genetic risk is discovered.
“Genetic testing and genomic research have the capacity to rapidly transform healthcare in Australia by potentially providing more cost-effective treatment options and improving patient outcomes by identifying a need for treatment before an issue arises,” Professor Robson said.
“We need a legislated ban to give consumers absolute certainty that their genetic status won’t be used by insurers to freeze them out of certain levels of cover.”
Dr Tiller concurred, noting that genetic information cannot be “put back in the box”.
Therefore, a partial ban – which, although not this is spelt out in the consultation paper, could involve exclusions from protection for certain genes – offers little security to patients as gene lists may change over time.
A partial ban, or moratorium, would also mean all health professionals involved in the process, from GPs to genetic counselors, would be required to both understand the financial law and give financial advice to patients looking to get genetic testing, added Dr Tiller, and it would make regulation much harder.
The industry-led regulation of the moratorium was also raised as a concern by the AMA.
“A partial ban or a vague moratorium only leads to more uncertainty and deters patients from having live-saving genetic testing and participating in genomic research,” said Dr Robson.
In its submission letter, sighted by TMR, the RACGP says the Australian Human Rights Commission should be supported to take the enforcement reins.
“The Australian government allocates responsibility and appropriate resources to the AHRC to enforce, promote, educate and support individuals and all relevant stakeholders to understand and meet the new legal obligations under the Act,” the letter says.
“The AHRC should consult with a range of genetics and genomics experts and stakeholders to achieve this goal.”
It suggests the government consider following in Canada’s footsteps to include an exception to the legislation that insurers cannot use genetic data to discriminate between applicants “to allow individuals to voluntarily disclose a test result to show they do not have a genetic change that runs in the family”.
“We need a national approach to the provision and regulation of genetic testing to ensure equitable access to testing in Australia,” said Professor Robson.
Although the consultation is now closed, Dr Tiller called on the public to contact their federal MP or assistant treasurer, or the AMA policy team for doctors.