Attitudes of Australian dermatologists on the use of genetic testing: A cross-sectional survey with a focus on melanoma

Primiero, Clare A.; Baker, Amy M.; Wallingford, Courtney K.; Maas, Ellie J.; Yanes, Tatiane; Fowles, Lindsay F.; Janda, Monika; Young, Mary‐Anne; Nisselle, Amy; Terrill, Bronwyn; Lodge, Jason M.; Tiller, Jane; Lacaze, Paul; Andersen, Hayley; McErlean, Gemma; Turbitt, Erin; Soyer, H. Peter; McInerney-Leo, Aideen

doi:10.3389/fgene.2022.919134

Cited by 4 publications

(7 citation statements)

References 78 publications

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“…This was despite a national campaign to disseminate the moratorium information and terms in 2019–2020, including through the HGSA. This level of awareness is lower than that among Australian health professionals (86%) (Tiller, Keogh, et al, 2022) but higher than among other studied groups, including Australian financial advisors, (Haining et al, 2023) genetic consumers (16%) (Tiller et al, 2023) and dermatologists (26%) (Primiero et al, 2022). By way of comparison, following the introduction of the United States 2008 Genetic Information NonDiscrimination Act (GINA) which protected against GD in risk‐rated health insurance, reported levels of awareness were lower, including among family physicians (50%) (Laedtke et al, 2012), nurse practitioners (34%) (Steck et al, 2016), and the general public (Lenartz et al, 2021; Prince et al, 2021).…”

Section: Discussionmentioning

confidence: 69%

“…This was despite a national campaign to disseminate the moratorium information and terms in 2019-2020, including through the HGSA. This level of awareness is lower than that among Australian health professionals (86%) (Tiller, Keogh, et al, 2022) but higher than among other studied groups, including Australian financial advisors, (Haining et al, 2023) genetic consumers (16%) (Tiller et al, 2023) and dermatologists (26%) (Primiero et al, 2022). By way of comparison, following the introduction of the United States 2008 Genetic Information NonDiscrimination Act (GINA)…”

Section: Discussionmentioning

confidence: 79%

“…Health insurance in Australia is community-rated (Australian Government, 2007), meaning risk information (including genetic results) cannot be used to deny cover or increase the cost of premiums. In 2018, a Parliamentary Joint Committee (PJC) inquiry into Australia's life insurance industry concluded that fear of GD was negatively affecting the uptake of genetic testing and participation in research, and recommended that life insurers be urgently prohibited from using genetic test results in underwriting (Parliament of Australia, 2018). The PJC recommended a moratorium, with government oversight, mirroring the UK's approach, where genetic test results cannot be used in any insurance underwriting, with the exception of Huntington's disease results for life cover >£500,000 (925,000 AUD) (Joly & Dalpe, 2022).…”

Section: Introductionmentioning

confidence: 99%

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

Yanes,

Blencoe,

Howard

et al. 2024

American J of Med Genetics Pt A

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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.

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Section: Discussionmentioning

confidence: 69%

Section: Discussionmentioning

confidence: 79%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Yanes,

Blencoe,

Howard

et al. 2024

American J of Med Genetics Pt A

Self Cite

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“…Non-genetics specialists anticipate that they will need to be proficient in genomics in their future practice, to enable diagnoses 10 , patient management 16 and access to targeted treatments or personalized medicine 17 . Referral to genetics can be a barrier to timely genomic medicine 18 , which can lead to delayed management of genetic disease.…”

Section: Introductionmentioning

confidence: 99%

“…A number of theories and approaches can be used to describe how innovative practice spreads throughout healthcare systems, focusing on the nature of the innovation itself 23 , the readiness of the system or environment for change, and the characteristics of the adopter themselves 22 . Several studies have suggested demographic and practice variables are associated with genetic/genomic testing practice 15 , 16 , 20 , 24 , 25 .…”

Section: Introductionmentioning

confidence: 99%

Investigating genomic medicine practice and perceptions amongst Australian non-genetics physicians to inform education and implementation

et al. 2023

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Genomic medicine is being implemented on a global scale, requiring a genomic-competent health workforce. To inform education as part of implementation strategies to optimize adoption of genomics by non-genetics physicians, we investigated current practices, perceptions and preferences relating to genomic testing and education. Australian non-genetics physicians completed an online survey; we conducted univariate and multivariate analyses of determinants of confidence and engagement with genomic medicine. Confident or engaged respondents were more likely to be pediatricians, have completed continuing genomics education (CGE) and/or have genomics research experience. Confident or engaged respondents were also more likely to prefer to request genomic testing with support from genetics services than other models. Respondents who had completed CGE and were engaged reported higher confidence than those who were not engaged. We propose a progression of genomic competence aligned with service delivery models, where education is one enabler of mastery or independence to facilitate genomic tests (from referral to requesting with or without clinical genetics support). Workplace learning could provide additional impetus for adoption.

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Protocol to evaluate a pilot program to upskill clinicians in providing genetic testing for familial melanoma

et al. 2022

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Introduction Genetic testing for hereditary cancers can improve long-term health outcomes through identifying high-risk individuals and facilitating targeted prevention and screening/surveillance. The rising demand for genetic testing exceeds the clinical genetic workforce capacity. Therefore, non-genetic specialists need to be empowered to offer genetic testing. However, it is unknown whether patient outcomes differ depending on whether genetic testing is offered by a genetics specialist or a trained non-genetics clinician. This paper describes a protocol for upskilling non-genetics clinicians to provide genetic testing, randomise high-risk individuals to receive testing from a trained clinician or a genetic counsellor, and then determine whether patient outcomes differed depending on provider-type. Methods An experiential training program to upskill dermatologically-trained clinicians to offer genetic testing for familial melanoma is being piloted on 10–15 clinicians, prior to wider implementation. Training involves a workshop, comprised of a didactic learning presentation, case studies, simulated sessions, and provision of supporting documentation. Clinicians later observe a genetic counsellor led consultation before being observed leading a consultation. Both sessions are followed by debriefing with a genetic counsellor. Thereafter, clinicians independently offer genetic testing in the clinical trial. Individuals with a strong personal and/or family history of melanoma are recruited to a parallel-group trial and allocated to receive pre- and post- genetic testing consultation from a genetic counsellor, or a dermatologically-trained clinician. A mixed method approach measures psychosocial and behavioural outcomes. Longitudinal online surveys are administered at five timepoints from baseline to one year post-test disclosure. Semi-structured interviews with both patients and clinicians are qualitatively analysed. Significance This is the first program to upskill dermatologically-trained clinicians to provide genetic testing for familial melanoma. This protocol describes the first clinical trial to compare patient-reported outcomes of genetic testing based on provider type (genetic counsellors vs trained non-genetic clinicians).

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Attitudes of Australian dermatologists on the use of genetic testing: A cross-sectional survey with a focus on melanoma

Cited by 4 publications

References 78 publications

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

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

Investigating genomic medicine practice and perceptions amongst Australian non-genetics physicians to inform education and implementation

Protocol to evaluate a pilot program to upskill clinicians in providing genetic testing for familial melanoma

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