Becoming agents for genomic change: genetic counsellors' views of patient care and implementation influences when genomics is mainstreamed.

Do, TT; Martyn, M; McClaren, B; McEwen, A; Gaff, C

Becoming agents for genomic change: genetic counsellors' views of patient care and implementation influences when genomics is mainstreamed.

Do, TT Martyn, M McClaren, B McEwen, A

Gaff, C

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Publisher:: SPRINGERNATURE
Publication Type:: Journal Article
Citation:: Eur J Hum Genet, 2024
Issue Date:: 2024-08-29

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Field	Value	Language
dc.contributor.author	Do, TT
dc.contributor.author	Martyn, M
dc.contributor.author	McClaren, B
dc.contributor.author	McEwen, A https://orcid.org/0000-0001-8705-1190
dc.contributor.author	Gaff, C
dc.date.accessioned	2024-09-25T04:12:49Z
dc.date.available	2024-08-12
dc.date.available	2024-09-25T04:12:49Z
dc.date.issued	2024-08-29
dc.identifier.citation	Eur J Hum Genet, 2024
dc.identifier.issn	1018-4813
dc.identifier.issn	1476-5438
dc.identifier.uri	http://hdl.handle.net/10453/180969
dc.description.abstract	Genetic counsellors (GCs) across the world are increasingly transitioning beyond clinical genetics services to meet the growing demands for genomic healthcare. This presents a unique opportunity for GCs to be 'genomic change agents' as they work in alternative models of care. Through various innovative models of mainstream care funded through a change program, we explored the views of GCs regarding their position as 'genomic change agents' and what may hinder or drive the success of their evolving roles. Guided by the Diffusion of Innovation Theory, we conducted qualitative interviews with all twelve GCs employed by the change program in different models of providing genomics across five specialties in Australia. Audio-recordings of all interviews were transcribed verbatim and analysed using inductive content analysis. Findings show that early in these new roles, participants held varied descriptions of 'genomics mainstreaming': some envisioned it as an end state exclusive to medical specialists practicing genomics while others saw the involvement of GCs as crucial. Participants believed they were uniquely positioned to expedite patient access to genomic testing and counselling and enhance medical specialists' capability to use genomics. Challenges included hesitancy of some medical specialists regarding the value of genomics in healthcare and potential tension arising from distinct perspectives and practice between genetic and non-genetic professionals. Participants anticipated a decline in the standard of care when non-genetic colleagues managed consent discussion and result disclosure. Our study underscores leadership support and peer connection with those in similar roles as essential elements for GCs' success in mainstream settings.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SPRINGERNATURE
dc.relation.ispartof	Eur J Hum Genet
dc.relation.isbasedon	10.1038/s41431-024-01686-9
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	0604 Genetics, 1103 Clinical Sciences
dc.subject.classification	Genetics & Heredity
dc.subject.classification	3105 Genetics
dc.subject.classification	3202 Clinical sciences
dc.title	Becoming agents for genomic change: genetic counsellors' views of patient care and implementation influences when genomics is mainstreamed.
dc.type	Journal Article
utslib.location.activity	England
utslib.for	0604 Genetics
utslib.for	1103 Clinical Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2024-09-25T04:12:48Z
pubs.publication-status	Published online

Abstract:

Genetic counsellors (GCs) across the world are increasingly transitioning beyond clinical genetics services to meet the growing demands for genomic healthcare. This presents a unique opportunity for GCs to be 'genomic change agents' as they work in alternative models of care. Through various innovative models of mainstream care funded through a change program, we explored the views of GCs regarding their position as 'genomic change agents' and what may hinder or drive the success of their evolving roles. Guided by the Diffusion of Innovation Theory, we conducted qualitative interviews with all twelve GCs employed by the change program in different models of providing genomics across five specialties in Australia. Audio-recordings of all interviews were transcribed verbatim and analysed using inductive content analysis. Findings show that early in these new roles, participants held varied descriptions of 'genomics mainstreaming': some envisioned it as an end state exclusive to medical specialists practicing genomics while others saw the involvement of GCs as crucial. Participants believed they were uniquely positioned to expedite patient access to genomic testing and counselling and enhance medical specialists' capability to use genomics. Challenges included hesitancy of some medical specialists regarding the value of genomics in healthcare and potential tension arising from distinct perspectives and practice between genetic and non-genetic professionals. Participants anticipated a decline in the standard of care when non-genetic colleagues managed consent discussion and result disclosure. Our study underscores leadership support and peer connection with those in similar roles as essential elements for GCs' success in mainstream settings.

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http://hdl.handle.net/10453/180969