Research Field: Genetic Discrimination
Genetic testing can save lives through preventing diseases such as cancer. However, Australian life-insurance companies can legally use applicants’ genetic test results to decline cover or increase policy cost. Research shows genetic discrimination fears deter at-risk individuals from clinical testing and research participation, creating significant barriers to research, clinical outcomes and precision-medicine initiatives. Many countries restrict or ban insurers’ access to genetic test results.
Jane Tiller is a lawyer, genetic counsellor and bioethics researcher with a passion for consumer protection in this area and has conducted research to gather evidence about genetic discrimination in Australia.
Jane has lobbied government; spoken to media (print, online, radio and TV); presented at professional and consumer conferences; engaged with patient support groups, international researchers and other stakeholders and given evidence to a Parliamentary Inquiry to campaign for greater government oversight. As a result, the life-insurance industry introduced a partial moratorium (ban) on using genetic test results in underwriting in 2019. Jane now leads a national project to monitor its effectiveness for consumer protection and make recommendations to enable evidence-based implementation of policy to empower preventive genomic medicine.
Jane is an Ethical, Legal & Social Adviser in Public Health Genomics at Monash University.