Genetics and Life Insurance – Time for Their Relationship to be Tested Again

This article is the first in a three-part series intended to inform actuaries about recent developments in the use of genetic testing in life insurance.

Since the project to map the human genome one quarter of a century ago, scientific progress in the field of genetics has been an exciting area given its potential for transformational outcomes for society.

As the capacity for people to access affordable genetic testing to identify and detail the link between their genes and their health risks continues to expand, public policy settings around life insurance must periodically reconsider the rules governing how financial risks of future health events are assessed, managed, and insured in an acceptable way.

In Australia, this relationship was first tested by a landmark Government review into how to protect human genetic information which completed in 2003. ^[1] The actuarial profession, for its part, helped inform that review, publishing a book Genetics in Society 2001 and calling earlier in the year, a forum for all stakeholders to be part of the discussion for a solution.

The current rules stem from a review in 2018 by a parliamentary joint committee inquiry into the life insurance industry. ^[2] The life insurance industry in response implemented a partial moratorium that restricts how life insurers treat predictive genetic information. ^[3]  

To help monitor the effectiveness of the current regulatory solution, the Government allocated funding to a group known as A-GLIMMER to monitor the effectiveness of the industry's moratorium amongst consumers, health professionals and researchers. ^[4]

The A-GLIMMER's final report, published earlier this year, calls for the Government to amend the Disability Discrimination Act to ban insurers from using genetic and genomic tests when underwriting risk-rated insurance.

While analysis of the underlying research calls into question the strength of this conclusion, some of the key findings of the report support the need for further action:

• Fear of the consequences of genetic testing is significant - the research finds that 30% of consumers initially interested in preventative genetic testing did not proceed. The report notes (and we agree) that further research is required to understand why.
• Consumer and health professional awareness is too low - the research finds that only 3% of consumers know about the Financial Services Council (FSC) Moratorium, which has now transferred to the Council of Australian Life Insurers (CALI). Of more concern is the finding that only 16% of "health professionals (HPs) who discuss genetic testing with patients" were able to correctly answer all 6 survey questions about the Moratorium and 58% have had no training on it.
• A strong desire for the government to create certainty - consumers dislike both the temporary nature of the FSC Moratorium (55% of consumers) and self-regulation (60% of consumers). The research also points to consumer desire for government regulation (78% of consumers). The role of Australian Human Rights Commission, ASIC and/or APRA, given the implications for balancing the interests of the broader pool, should all be considered.
• Patients with high-risk genetic conditions are concerned - the research finds that 82% of patients with high-risk genetic conditions favour a ban on use of genetic tests in life insurance. However, this survey of patients included 76% with an adverse genetic test result. 16% of surveyed patients knew about the existing rules, only half had tried to get life insurance and 19% had tried and found it difficult to get life insurance. Despite the low level of awareness, the perceptions of this patient group are important.

With the A-GLIMMER research complete, we are at the point where the rules governing the use of genetic information in life insurance are being reviewed again with the Government via Treasury issuing a consultation paper seeking feedback by the end of January. ^[5]

The actuarial profession has an important public interest role to play in helping interpret the emerging evidence to provide an objective risk-based view to address questions of balance and equity across different and sometimes competing interests.

As an important first step, the Institute recently hosted a roundtable. This roundtable, co-chaired by Anthony Lowe (Chair of the Institute's Public Policy Council Committee) and Krystal Barter (CEO of the health consumer advocacy body, Humanise Health), was an opportunity for attendees to hear directly from consumer advocates, people with lived experiences, health experts and senior actuaries to get their perspectives.

Attendees of the Genetics and Insurance Roundtable

(Left to right: Colman Taylor, Aidan Nguyen, Vanessa Beenders, Anthony Lowe, Jessica Chen, Bill Konstantinidis, Krystal Barter, Elayne Grace, Sandy Kervin, Jen Knight, Kate-Marie Thorpe, Daniel Levy, Nick Kulikov and David Thomas)

There was considerable discussion about the impact on the lives of individuals and their families of being excluded from life insurance.

(As identified by A-GLIMMER) fear of getting genetic tests is an important topic because it can preclude individuals from getting information that would otherwise allow preventative health measures and receipt of timely medical treatment. It was recognised that life insurance underwriting requirements related to disclosure of genetic testing results contribute to that hesitancy.

Naturally, the extent of the risk and the role of life insurers in supporting individuals with known genetic risk factors was hotly discussed. There was agreement that it is a task for all stakeholders, including the actuarial profession, to propose ethical and robust solutions to this conundrum, which is failing at least a group of consumers and not sustainable.

The task at hand now for the profession is to consider the diverse range of perspectives to help Government determine a path forward. If you are interested in developing the Institute's position in response to Treasury's consultation, please express your interest in joining the Working Group or the Institute's Public Policy Team .

References

^[1] https://www.alrc.gov.au/inquiry/protection-of-human-genetic-information/

^[2] https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Corporations_and_Financial_Services/LifeInsurance/Report

^[3] See Appendix A of the Life Insurance Code of Practice - cali.org.au/wp-content/uploads/2023/09/CALI_Life-Insurance-Code-of-Practice-September-2023_FINAL.pdf

^[4] https://www.monash.edu/medicine/a-glimmer/about-the-a-glimmer-project

^[5] Use of genetic testing results in life insurance underwriting | Treasury.gov.au