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Journal of Medical GeneticsGenetic & Genomic MedicinePeer-reviewed journal article

A step forward, but still inadequate: Australian health professionals' views on the genetics and life insurance moratorium

Jane M. TilleriD, Louise Anne KeoghiD, Aideen M McInerney-LeoiD, Andrea BelcheriD, Kristine K Barlow-StewartiD, Tiffany F. BoughtwoodiD, Penny GleesoniD, Grace Dowling, Anya E. R. PrinceiD, Yvonne BombardiD, Yann JolyiD, Martin Bruce DelatyckiiD, Ingrid WinshipiD, Margaret F. A. OtlowskiiD, Paul A LacazeiD

PDFDOIPreprint

Abstract

BackgroundIn 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 AUD$500,000 of life cover). MethodsWe 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. ResultsBetween April-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 moratoriums 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 moratoriums 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. ConclusionWhile 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.

Citations
9
FWCI
1.95
Field percentile
top 15%

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