Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance Article Swipe
Tatiane Yanes
,
Marisa Blencoe
,
Antonia Howard
,
Jane Tiller
,
Courtney K. Wallingford
,
Margaret Otlowski
,
Louise Keogh
,
Paul Lacaze
,
Aideen McInerney‐Leo
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1002/ajmg.a.63565
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1002/ajmg.a.63565
Fear of insurance discrimination can inhibit genetic research participation. In 2019, an industry‐led partial moratorium on using genetic results in Australian life insurance underwriting was introduced. This mixed‐methods study used online surveys ( n = 59 participants) and semi‐structured interviews ( n = 22 participants) to capture researchers’ perceptions about the moratorium. 66% ( n = 39/59) were aware of the moratorium before the survey. Of researchers returning genetic results, 56% ( n = 22/39) reported that insurance implications were mentioned in consent forms, but a minority reported updating consent forms post‐moratorium ( n = 13/39, 33%). Most researchers reported that concerns regarding life insurers utilizing research results inhibited recruitment (35/59, 59%), and few perceived that the moratorium positively influenced participation ( n = 9/39, 23%). These findings were supported by qualitative findings which revealed that genetic discrimination concerns were a major issue for some individuals, though these concerns could be eclipsed by the promise of a diagnosis through research participation. The majority thought a regulatory solution should be permanent ( n = 34/51, 67%), have financial limits of at least ≥1,000,000 AUD (37/51, 73%), and involve government oversight/legislation ( n = 44/51, 86%). In an era where an increasing number of research studies involve genomics as a primary or secondary objective, it is crucial that we have regulatory solutions to address participants’ hesitation.
Related Topics
Concepts
Underwriting
Legislation
Government (linguistics)
Life insurance
Qualitative research
Genetic discrimination
Perception
Genetic testing
Family medicine
Political science
Public relations
Business
Psychology
Actuarial science
Medicine
Law
Sociology
Social science
Linguistics
Philosophy
Internal medicine
Neuroscience
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1002/ajmg.a.63565
- https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajmg.a.63565
- OA Status
- hybrid
- Cited By
- 2
- References
- 20
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4391813391
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4391813391Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1002/ajmg.a.63565Digital Object Identifier
- Title
-
Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insuranceWork title
- Type
-
articleOpenAlex work type
- Language
-
enPrimary language
- Publication year
-
2024Year of publication
- Publication date
-
2024-02-14Full publication date if available
- Authors
-
Tatiane Yanes, Marisa Blencoe, Antonia Howard, Jane Tiller, Courtney K. Wallingford, Margaret Otlowski, Louise Keogh, Paul Lacaze, Aideen McInerney‐LeoList of authors in order
- Landing page
-
https://doi.org/10.1002/ajmg.a.63565Publisher landing page
- PDF URL
-
https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajmg.a.63565Direct link to full text PDF
- Open access
-
YesWhether a free full text is available
- OA status
-
hybridOpen access status per OpenAlex
- OA URL
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https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajmg.a.63565Direct OA link when available
- Concepts
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Underwriting, Legislation, Government (linguistics), Life insurance, Qualitative research, Genetic discrimination, Perception, Genetic testing, Family medicine, Political science, Public relations, Business, Psychology, Actuarial science, Medicine, Law, Sociology, Social science, Linguistics, Philosophy, Internal medicine, NeuroscienceTop concepts (fields/topics) attached by OpenAlex
- Cited by
-
2Total citation count in OpenAlex
- Citations by year (recent)
-
2025: 1, 2024: 1Per-year citation counts (last 5 years)
- References (count)
-
20Number of works referenced by this work
- Related works (count)
-
10Other works algorithmically related by OpenAlex
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