The position of Australian Genomics and the Australian Alliance for Indigenous Genomics (ALIGN) on the use of genetic testing results in life insurance underwriting.
- Legislation must be introduced to protect consumers, remove the fear of genetic discrimination, and ensure government oversight of insurers’ compliance.
- The legislation should not contain any limits, caps, or exclusions, to ensure that consumers can be confident that their genetic results are fully protected. Partial consumer protection is inadequate.
- Compliance with the legislation must be monitored, and there needs to be a strong pathway for enforcement and consumer complaints, so that consumers know where they can go to get help if an insurer is not complying with the legislation.
- Particular attention should be given to the significant impact genetic discrimination has on Aboriginal and Torres Strait Islander People and the critical importance of these protections to avoid compounding inequity of access to genetic and genomic healthcare services and research.