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

Australia Genetic Testing Humans Insurance, Life Surveys and Questionnaires
ethics genetic counseling health human genetics public health

Journal

Journal of medical genetics
ISSN: 1468-6244
Titre abrégé: J Med Genet
Pays: England
ID NLM: 2985087R

Informations de publication

Date de publication:
08 2022
Historique:
received: 25 05 2021
accepted: 04 09 2021
pubmed: 22 9 2021
medline: 26 7 2022
entrez: 21 9 2021
Statut: ppublish

Résumé

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). 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. 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. 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.

Sections du résumé

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.

Identifiants

DOI: 10.1136/jmedgenet-2021-107989 PMID: 34544841
pubmed: 34544841
pii: jmedgenet-2021-107989
doi: 10.1136/jmedgenet-2021-107989
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

817-826

Informations de copyright

© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: None declared.

Auteurs

Jane M Tiller (JM)

School of Public Health and Preventive Medicine, Monash University, Faculty of Medicine, Nursing and Health Sciences, Melbourne, Victoria, Australia jane.tiller@monash.edu.
Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
ORCID: 0000-0003-3906-6632

Louise A Keogh (LA)

Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia.

Aideen M McInerney-Leo (AM)

Human Genomics Group, University of Queensland Diamantina Institute, Woolloongabba, Queensland, Australia.

Andrea Belcher (A)

The University of Queensland, Faculty of Medicine, Herston, Queensland, Australia.
Australian Genomics, Melbourne, Victoria, Australia.

Kristine Barlow-Stewart (K)

The University of Sydney, Sydney Medical School, Sydney, New South Wales, Australia.

Tiffany Boughtwood (T)

Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
Australian Genomics, Melbourne, Victoria, Australia.

Penny Gleeson (P)

School of Law, Deakin University, Burwood, Victoria, Australia.

Grace Dowling (G)

School of Public Health and Preventive Medicine, Monash University, Faculty of Medicine, Nursing and Health Sciences, Melbourne, Victoria, Australia.

Anya Prince (A)

The University of Iowa College of Law, Iowa City, Iowa, USA.

Yvonne Bombard (Y)

University of Toronto, Institute of Health Policy, Management and Evaluation, Toronto, Ontario, Canada.
Li Ka Shing Knowledge Institute, Toronto, Ontario, Canada.
ORCID: 0000-0002-9516-4539

Yann Joly (Y)

Department of Human Genetics, McGill University, Montreal, Québec, Canada.

Martin Delatycki (M)

Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
Victorian Clinical Genetics Services Ltd, Parkville, Victoria, Australia.

Ingrid M Winship (IM)

Clinical Genetics, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Department of Medicine, The University of Melbourne, Melbourne, Victoria, Australia.

Margaret Otlowski (M)

University of Tasmania, Faculty of Law, Hobart, Tasmania, Australia.

Paul Lacaze (P)

School of Public Health and Preventive Medicine, Monash University, Faculty of Medicine, Nursing and Health Sciences, Melbourne, Victoria, Australia.

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Classifications MeSH

questionsmedicales.fr › Régions géographiques › Océanie › Australasie › Australie › A step forward, but still inadequate:...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Services de santé › Services de médecine préventive › Services de diagnostic › Dépistage génétique › A step forward, but still inadequate:...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › A step forward, but still inadequate:...
questionsmedicales.fr › Organisations et économie des soins de santé › Économie › Financement organisé › Assurance › Assurance vie › A step forward, but still inadequate:...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › A step forward, but still inadequate:...