The A-GLIMMER (Australian Genetics & Life Insurance Moratorium: Monitoring the Effectiveness and Response) Project: Final Stakeholder Report

The field of genetics has great potential to improve medicine and public health, through 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. 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, similar to the moratorium operating in the United Kingdom (UK) since 2001. 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. The FSC Moratorium is industry self-regulated, with no government oversight. To investigate effectiveness of the FSC Moratorium as a regulatory solution to genetic discrimination in Australian life insurance, the Commonwealth Government funded the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project from 2020- 2023. This funding was awarded through the Genomics Mission of the Medical Research Future Fund. This independent project has gathered evidence to assess the effectiveness of the FSC Moratorium, and report findings to Government and other stakeholders. An Interim Stakeholder Report presented the findings of the A-GLIMMER Project’s research as at August 2022. This Final Stakeholder Report sets out the A-GLIMMER Project’s findings – published and unpublished – and makes recommendations to the Australian Government (the Project funder). The studies undertaken as part of the Project investigated the views and experiences of health professionals, consumers, researchers, and financial advisors, to assess the impact of the FSC Moratorium. The purpose of this Final Stakeholder Report is to: • provide a summary of the A-GLIMMER Project’s research findings and an assessment of the FSC Moratorium’s self-regulatory model; • make recommendations based on these research findings and analysis; and • inform the Australian Government’s assessment of the FSC Moratorium and alternative regulatory mechanisms to prevent genetic discrimination. The A-GLIMMER Project’s research findings demonstrate that the FSC Moratorium – either in its current form or as included in the proposed 2023 Life Insurance Code of Conduct – is inadequate to address and prevent genetic discrimination in life insurance. It should be replaced with a legislative model of prohibition. This is supported by the A-GLIMMER Project’s findings which show that: • Key stakeholder groups (health professionals, consumers and researchers) are concerned about the life insurance industry’s self-regulation of the FSC Moratorium and express a low level of confidence in the effectiveness of the FSC Moratorium. An overwhelming majority of these stakeholders, as well as many financial advisers that were interviewed, were also concerned about the absence of any Australian Government oversight of the FSC 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. • Similarly, 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 advisers. Further, 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. In late 2022, a newly formed body – the Council of Australian Life Insurers (‘CALI’) – declared that it was now the peak representative body of the Australian life insurance industry. According to CALI and media reports, CALI is backed by a significant proportion of the Australian life insurance industry. To our knowledge, the FSC has not made any public statements about CALI’s formation. It is therefore unclear what implications the formation of CALI will have for the self-regulation of the life insurance industry more broadly, or for the FSC Moratorium in particular. This creates further uncertainty for consumers, health professionals and other stakeholders in this area.