Moratorium on Genetic Testing & Life Insurance: Monitoring the impact

The use of genetic test results in insurance raises ethical, legal and social concerns. The issue is one of the most significant ethical, legal and social issues (ELSI) facing Australia in the area of genomics. Adequate regulatory protection is required to ensure the issue does not act as a barrier to the implementation of genomic medicine. Other countries have banned or restricted the use of genetic test results in risk-rated insurance. Recently, after a long period of advocacy and research which I led, the Australian life insurance industry implemented a moratorium restricting the use of genetic test results in life insurance (effective 1 July 2019), representing a major change to policy. My group has been successful in being awarded a research grant from the Medical Research Future Fund (MRFF) Genomics Health Futures Mission to monitor the impact of this moratorium over the next 3 years (2021-24). We now seek a highly motivated PhD student interested in ELSI and genomics to join the research team, working with thought-leaders across the country to collect important evidence to inform future regulatory decisions. After July 2019, it is necessary to monitor the impact, value and effectiveness of the moratorium from different stakeholder perspectives. The moratorium will be reviewed in 2022 by the Financial Services Council (FSC), to consider extension beyond its current 2024 end date. If the moratorium is found to be ineffective or the FSC does not extend its operation, the impact will need to be considered by the Federal Government, with the possibility of legislation. To properly inform the moratorium’s review, independent evidence collected from different stakeholders is required. That critical function is being served by this research project. Our project brings together Australia’s leading researchers, clinicians, patient groups, and policy experts to answer an over-arching research question - is the FSC moratorium an appropriate long-term regulatory solution for Australia? We will address this by collecting quantitative and qualitative data post-moratorium, directly comparable to similar data we collected and published pre-moratorium (baseline). We will have input from consumers, healthcare providers, researchers and the FSC to ensure a study design which captures the opinions and experiences of all key stakeholders. We have widespread support from patient and consumer groups, and the project has been endorsed by the Victorian Dept. of Health & Human Services, Human Genetics Society of Australasia & Australian Genomics. We will build on our existing working relationship with the insurance industry (FSC), as a partner. We will measure whether the moratorium terms have been disseminated and understood by stakeholders. We will partner with four leading Australian research cohorts returning genomic results to research participants. Questionnaires/interviews will evaluate how the moratorium impacts clinical genetics practice, testing uptake, access to insurance products, and reports of genetic discrimination. The FSC’s database will be accessed to determine how the moratorium is impacting underwriting decisions. Finally, a summative analysis and final project report will assess whether the moratorium achieved its intended goals. Genomic testing is transitioning from rare disease and cancer into mainstream care. However, the extent to which mainstreaming of genomics will be successful, is directly related to public trust and participation. Current concerns in Australia around insurance discrimination must be addressed if the full benefits of genomic medicine are to be realized. We seek motivated candidates with backgrounds in biology, genetics, law, regulation, policy, ethics, genetic counselling and other related fields.