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

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Ethics and policy
Original research
A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium
  1. Jane M Tiller1,2,
  2. Louise A Keogh3,
  3. Aideen M McInerney-Leo4,
  4. Andrea Belcher5,6,
  5. Kristine Barlow-Stewart7,
  6. Tiffany Boughtwood2,6,
  7. Penny Gleeson8,
  8. Grace Dowling1,
  9. Anya Prince9,
  10. Yvonne Bombard10,11,
  11. Yann Joly12,
  12. Martin Delatycki13,14,
  13. Ingrid M Winship15,16,
  14. Margaret Otlowski17,
  15. Paul Lacaze1
  1. 1 School of Public Health and Preventive Medicine, Monash University, Faculty of Medicine, Nursing and Health Sciences, Melbourne, Victoria, Australia
  2. 2 Murdoch Childrens Research Institute, Parkville, Victoria, Australia
  3. 3 Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia
  4. 4 Human Genomics Group, University of Queensland Diamantina Institute, Woolloongabba, Queensland, Australia
  5. 5 The University of Queensland, Faculty of Medicine, Herston, Queensland, Australia
  6. 6 Australian Genomics, Melbourne, Victoria, Australia
  7. 7 The University of Sydney, Sydney Medical School, Sydney, New South Wales, Australia
  8. 8 School of Law, Deakin University, Burwood, Victoria, Australia
  9. 9 The University of Iowa College of Law, Iowa City, Iowa, USA
  10. 10 University of Toronto, Institute of Health Policy, Management and Evaluation, Toronto, Ontario, Canada
  11. 11 Li Ka Shing Knowledge Institute, Toronto, Ontario, Canada
  12. 12 Department of Human Genetics, McGill University, Montreal, Québec, Canada
  13. 13 Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  14. 14 Victorian Clinical Genetics Services Ltd, Parkville, Victoria, Australia
  15. 15 Clinical Genetics, Royal Melbourne Hospital, Parkville, Victoria, Australia
  16. 16 Department of Medicine, The University of Melbourne, Melbourne, Victoria, Australia
  17. 17 University of Tasmania, Faculty of Law, Hobart, Tasmania, Australia
  1. Correspondence to Jane M Tiller, School of Public Health and Preventive Medicine, Monash University Faculty of Medicine Nursing and Health Sciences, Melbourne, VIC 3004, Australia; jane.tiller{at}monash.edu

Abstract

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.

  • ethics
  • human genetics
  • public health
  • genetic counseling
  • health

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.

https://doi.org/10.1136/jmedgenet-2021-107989

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    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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    Footnotes

    • 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.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.