These contrasting views on genetic testing in life insurance may help you sharpen your stance

Following the submission deadline for the government’s consultation on the genetic testing moratorium in life insurance, a handful of industry bodies are strategically unveiling their views through press releases, online publications and interviews, each aiming to align themselves favourably in this critical debate.

The 2019 moratorium, which is still in effect, sets specific limits on the use of genetic test results in the life insurance underwriting process. For example, your life insurance provider can’t require you to take a genetic test as a condition of your policy; and for death cover policies under $500,000, they can’t require you to disclose the results of any prior tests you’ve taken.

So, as we await the next steps in the government's review of these submissions, let's look at a cross-section of submissions that are currently available. 

Australian Medical Association - total ban

The Australian Medical Association (AMA) is dedicated to representing and advocating for the interests of medical practitioners, including doctors and physicians.

The AMA proposes a total legislative ban on life insurance providers requiring genetic test results in their underwriting processes.

They point out that genetic testing can lead to breakthroughs in treating and preventing diseases. Yet, the current practice of potentially using these tests against policy applicants is leading many to avoid undergoing genetic tests that could detect and help prevent life-threatening conditions.

The AMA criticises the current moratorium for not effectively addressing the issue and suggests that without a total ban, insurance companies will continue to use genetic information in ways that could disadvantage policyholders. 

Actuaries Institute - increased caps

The Actuaries Institute is an organisation that represents and serves actuaries, which are professionals who use mathematical and statistical techniques to analyze and assess financial risks in various industries, including insurance.

They advocate for legislation that aligns with the current moratorium's principles, which allows insurance providers to require you to hand over the results of any previous genetic you've taken in the past.

However, to address the prevailing narrative that the moratorium has been unsuccessful, they propose significantly increased financial limits for disclosing genetic test results, for example by prohibiting insurance providers from requiring genetic testing disclosure for policies under $1M (compared to the $500k limit set by the current moratorium). 

This approach, they argue, would provide a balance between consumer protection and the viability of the insurance market. 

Intersex Human Rights Australia - systemic reform

Intersex Human Rights Australia (IHRA) champions the rights of individuals born with sex characteristics that diverge from traditional male or female categories, at both physical and chromosomal levels

They point out that many intersex individuals have had genetic testing done as children without their consent, and that allowing insurance providers to require these test results amounts to discrimination.

The IHRA submission proposes significant reforms, aiming for solutions that extend well beyond simply bans and contribution caps. For example, they advocated for a shift from individual risk-rated to community risk-rated insurance to combat discrimination, emphasising a more equitable system where risks and costs are shared among all policyholders. 

Recognising the challenge of such systemic reform, they also propose a legal approach inspired by Canada's Genetic Non-Discrimination Act. This legislation not only bans the mandatory genetic testing and disclosure for insurance or employment but also enhances protections by including genetic characteristics under the Canadian Human Rights Act, offering a broader defence against discrimination.

Next Steps in the genetic testing debate

The submissions highlighted here offer a glimpse into the range of views on the use of genetic testing in life insurance. So far, only a few organisations have made their submissions public, and the Department of Treasury hasn't released additional ones yet. There's also evidence suggesting that individual members of the community, such as those with hereditary health concerns, have made submissions, highlighting the issue's personal impact.

If you missed the submission deadline but feel strongly about the issue, it's not too late to get involved. Reaching out to your representatives at the local, state and federal levels can be an effective way to voice your opinions and influence future policies on genetic testing and life insurance.