Dr Jane Tiller, Monash University
The field of genetics has great potential to improve medicine and public health, by enabling diagnosis, prevention and early treatment of disease. However, currently in Australia the life insurance industry is legally permitted to use genetic test results in underwriting, which can lead to discrimination. Insurance fears can also act as a barrier, by deterring people from having potentially life-saving genetic testing that could match them to tailored interventions and treatments, as well as from participation in genetic research. Other countries have banned or restricted the use of genetic results by life insurers.
This issue will be debated by Parliament on 4 September 2023 and you can take action to support a ban on the use of genetic test results in life insurance.
In 2018, a Joint Parliamentary Committee Inquiry into the Life Insurance Industry recommended that Australia urgently implement a moratorium (or ban) on the use of genetic test results in life insurance underwriting, and that the government maintain a watching brief to consider whether legislation would be required in future.
The insurance industry moratorium
In 2019, the life insurance industry peak body, the Financial Services Council (FSC), introduced a partial moratorium requiring applicants to disclose genetic test results only for policies above certain financial limits (for e.g. $500,000 for life cover and $4,000/month for income protection). The FSC Moratorium is industry self-regulated, with no government oversight.
To investigate the effectiveness of the FSC Moratorium as a solution to genetic discrimination, the Commonwealth Government funded the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project from 2020-2023. The studies undertaken as part of the Project investigated the views and experiences of health professionals, consumers, researchers, and financial advisors. This independent project has gathered evidence to assess the effectiveness of the FSC Moratorium, and report findings to Government and other stakeholders.
Project findings and recommendations to Government
The Project’s Final Stakeholder Report, released on 30 June 2023, set out the Project’s findings and made recommendations to the Australian Government. The Project found that the FSC Moratorium falls short of the expectations of the 2018 Parliamentary recommendations, is inadequate to address and prevent genetic discrimination in life insurance, and should be replaced with a legislative model of prohibition. This is supported by the Project’s findings:
- Key stakeholder groups (health professionals, consumers and researchers) are concerned about the life insurance industry’s self-regulation of the FSC Moratorium and expressed a low level of confidence in its effectiveness. Most of these stakeholders, as well as many financial advisers that were interviewed, were also concerned that the Australian Government lacked oversight of the Moratorium.
- A very high proportion of key stakeholders consider that legislation is required to regulate the use of genetic test results in life insurance underwriting (93% of health professionals, 88% of patients with experience of genetic testing, 78% of the general public, and 86% of researchers).
- There are instances of non-compliance with the FSC Moratorium, including where insurance companies have asked insurance applicants about genetic testing, contrary to the terms of the FSC Moratorium. Further, there is a lack of effective mechanisms to enforce the FSC Moratorium or to seek redress.
- Stakeholders are concerned about the uncertainty inherent in the industry-led nature of the FSC Moratorium, and the potential for the use of genetic test results by life insurers in the future.
- There is a broad view across stakeholder groups that the FSC Moratorium’s financial limits (i.e. life policies <$500K) are too low to enable individuals to obtain sufficient life insurance.
- Many genomic researchers reported that the potential use of genomic test results by insurers was a barrier to the recruitment of research participants.
- There is poor awareness and knowledge about the FSC Moratorium among stakeholder groups, including differing understandings of how the limits should be applied, even among financial
Industry self-regulation is an ineffective regulatory model to address genetic discrimination in relation to life insurance in Australia. This is in part because of the inherent conflict of interest in industry self-regulation of its own access to genetic information; the risk of harm to individuals through discrimination; and restricted access to preventive healthcare. In addition, there is considerable uncertainty, instability and a lack of cohesion surrounding the current self-regulation of the Australian life insurance industry.
What can you do?
The Australian Government is currently considering the A-GLIMMER Project’s recommendations and its policy response. A motion on this issue will be debated in Parliament on 4 September 2023, led by Josh Burns MP, Chair of the Parliamentary Joint Committee on Human Rights. If you support consumer protections in this area, you can use this tool to write to your Federal MP in one easy step, and ask them to support these changes.
Dr Jane Tiller is Ethical, Legal & Social Adviser, Public Health Genomics, Monash University and lead author of the A-GLIMMER Final Stakeholder Report
Image: Areka Socha/Pixabay