Background In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover).
Methods We surveyed Australian health professionals (HPs) who discuss genetic testing with patients, to assess knowledge of the moratorium; reported patient experiences since its commencement; and HP views regarding regulation of genetic discrimination (GD) in Australia.
Results Between April and June 2020, 166 eligible HPs responded to the online survey. Of these, 86% were aware of the moratorium, but <50% had attended related training/information sessions. Only 16% answered all knowledge questions correctly, yet 69% believed they had sufficient knowledge to advise patients. Genetics HPs’ awareness and knowledge were better than non-genetics HPs’ (p<0.05). There was some reported decrease in patients delaying/declining testing after the moratorium’s introduction, however, 42% of HPs disagreed that patients were more willing to have testing post-moratorium. Although many (76%) felt the moratorium resolved some GD concerns, most (88%) still have concerns, primarily around self-regulation, financial limits and the moratorium’s temporary nature. Almost half (49%) of HPs reported being dissatisfied with the moratorium as a solution to GD. The majority (95%) felt government oversight is required, and 93% felt specific Australian legislation regarding GD is required.
Conclusion While the current Australian moratorium is considered a step forward, most HPs believe it falls short of an adequate long-term regulatory solution to GD in life insurance.
- human genetics
- public health
- genetic counseling
Data availability statement
Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information.
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Twitter @JaneMTiller, @AndreaBelcher6
Contributors JMT conceived the project and designed the survey with assistance from PL, LAK, AMM-L, AB, KB-S, TB, MD, IMW and MO. PG and GD assisted with interpretation of data. AP, YB and YJ assisted with providing international perspectives on the project and interpretation of data. JMT wrote the first draft of the manuscript with input from PL. All authors critically reviewed and provided comments on the second and subsequent drafts of the manuscript.
Funding The project is supported by a grant from the Australian Government’s Medical Research Future Fund (MRFF), ref 76 721. AMM-L is funded by a National Health and Medical Research Council (NHMRC) Early Career Fellowship (ID 1158111). PL is supported by a National Heart Foundation Future Leader Fellowship (ID 102604).
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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