Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance.

Autor: Yanes T; Frazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia., Blencoe M; Frazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia., Howard A; Graduate School of Health, University of Technology Sydney, Sydney, New South Wales, Australia., Tiller J; School of Public Health and Preventive Medicine, Monash University Faculty of Medicine Nursing and Health Sciences, Melbourne, Victoria, Australia., Wallingford C; Frazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia., Otlowski M; University of Tasmania, Hobart, Tasmania, Australia., Keogh L; Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia., Lacaze P; School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia., McInerney-Leo A; Frazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia.
Jazyk: angličtina
Zdroj: American journal of medical genetics. Part A [Am J Med Genet A] 2024 Jun; Vol. 194 (6), pp. e63565. Date of Electronic Publication: 2024 Feb 14.
DOI: 10.1002/ajmg.a.63565
Abstrakt: 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.
(© 2024 The Authors. American Journal of Medical Genetics Part A published by Wiley Periodicals LLC.)
Databáze: MEDLINE
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