Genetic testing can provide vital information. They can help diagnose disease, enable access to preventative care, expedite early detection and treatment, and guide patients’ treatment options.
In Australia, life insurance companies can legally use genetic test results for discriminatory purposes. They may refuse to provide life insurance coverage, increase the cost of premiums, or impose exclusions on an individual’s coverage. This is called “genetic discrimination.”
Recently, a number of federal parliamentarians called for a ban on genetic discrimination by life insurance companies. This follows recommendations of our research team for legislative reform Australians therefore do not forgo important genetic testing for fear of this discrimination.
Learn more: Health experts: Australians need more protection from genetic discrimination
Why would you take a genetic test?
We do not choose our genetic risk factors. They exist from birth, cannot be changed and are often passed from parents to children, causing generations of disease.
Genetic testing can, in some cases, end the generational curse of genetic diseases through prevention and early intervention.
One of the best-known examples is the search for changes in the BRCA1 gene, which significantly increases the risks of breast, ovarian and prostate cancer.
Angelina Joliewho carries the BRCA1 gene mutation, wrote in the famous New York Times in 2013 about her decision to undergo surgeries to significantly reduce her chances of developing cancer.
How is this discrimination currently allowed?
The Disability Discrimination Act 1992 (Cth) prohibits discrimination on a number of different bases, including genetic risk factors.
However, there is a specific exclusion in the law that allows life insurers to discriminate in a way that other entities are not allowed to do.
This means that companies providing life insurance, income protection and disability insurance can discriminate on the basis of genetic risk of disease. Other companies that offer at-risk insurance (in which insurers assess an individual’s risk factors and change coverage or premiums based on that risk) may also use genetic test results for discrimination. . This includes travel insurance.
However, health insurance is not risk-based. This means that a health insurer is not allowed to deny coverage or change the cost of premiums based on risk factors, including genetic risk factors.
Protections are necessary
Fears of insurance discrimination deter a lot of people to undergo genetic testing or participate in genetic research. It is for this reason that many other countries having forbidden the use of genetic results by insurance companies.
Canada did this in 2017. Its law prohibits entities (including insurance companies) from collecting or using genetic results for discriminatory purposes against individuals.
Insurance industry organizations frequently assert that banning the use of genetic results will increase the cost of premiums, making them unaffordable.
Before the adoption of the Canadian law, its privacy commissioner commissioned a study actuarial expert And economic analyst to examine the impact that this ban could have on the Canadian insurance sector.
Both experts concluded that the impact of Canada’s ban would be negligible in the medium term, and the Privacy Commissioner welcomed the law as an “important step for privacy and human rights”.
Genetic testing should expand
Currently, only people with a strong personal or family history of certain diseases can benefit from publicly funded genetic testing.
However, research projects like the DNA Screen Study pilot the offer of DNA screening of the entire population.
Learn more: Should I have my DNA tested? We interviewed five experts
DNA Screen provides 10,000 young Australians (aged 18-40) with testing for genetic risk factors for cancer and heart disease, which can be prevented or treated early.
However, we have to inform people when they enroll about potential life insurance discrimination, and many of them change their minds about participating in our study.
As genetic testing offerings may expand to the entire population in the future, each person offered a genetic test will need to think about the implications for their life insurance.
The long road to legislating protections
Following parliamentary recommendations to ban the use of genetic results by life insurers in 2018, the life insurance industry introduced a partial, self-regulated moratorium on the use of genetic results in 2019.
We were concerned about its conditions and the fact that it was self-regulated, with no government oversight. So we collected views Since health professionals, consumersresearchers and financial advisors.
We found the industry moratorium I have not met the expectations of parliamentary recommendations. The overwhelming majority of patients, the general public, health professionals and genetic researchers believed that legislation on this issue was necessary. OUR final reportpublished in June, recommends that the Australian government introduce a legislative ban on the use of genetic test results in insurance underwriting.
This week, MP Josh Burns, chair of the Joint Parliamentary Committee on Human Rights, took the first step in make a motion for Parliament to consider political reform on this issue.
This proposal was supported by five other federal deputies, notably from the coalition and independents. As Labor MP Louise Miller-Frost explains:
“Australians should be able to make these decisions based on their health needs, not their financial needs, and we have the opportunity to make that a reality… self-regulation is clearly not enough to protect our interests.” I think legislation is needed.
Separate speeches by MP Dr Daniel Mulino and the Deputy Minister of Health and Aging, Ged Kearney this week he also supported the motion.
Kearney spoke about several constituents who shared their concerns on this issue and also asked policy changes. She highlighted the benefits to life insurance companies if people can undergo genetic testing and are able to take preventative measures, to become “better risks”.
The Treasury and Stephen Jones MP (Assistant Treasurer and Minister for Financial Services) are currently considering the appropriate policy solution, in conjunction with the Department of Health and Aging and the Attorney General’s Department. There is no timetable for the introduction of this legislation, but this urgent policy change must be a priority for the current government.
Learn more: Population DNA testing to detect disease risks is coming. Here are five things to know
This article was originally published on The conversation.
