My Research Results: a program to facilitate return of clinically actionable genomic research findings.

Willis, AM; Terrill, B; Pearce, A; McEwen, A; Ballinger, ML; Young, M-A

My Research Results: a program to facilitate return of clinically actionable genomic research findings.

Willis, AM Terrill, B Pearce, A McEwen, A

Ballinger, ML Young, M-A

Permalink

Publisher:: SPRINGERNATURE
Publication Type:: Journal Article
Citation:: European journal of human genetics : EJHG, 2022, 30, (3), pp. 363-366
Issue Date:: 2022-01-01

Open Access

Copyright Clearance Process

Recently Added
In Progress
Open Access

This item is open access.

Adobe PDF

Download Accepted versionAdobe PDF (198.61 kB)

View on publisher's site

View statistics

Full metadata record

Field	Value	Language
dc.contributor.author	Willis, AM
dc.contributor.author	Terrill, B
dc.contributor.author	Pearce, A
dc.contributor.author	McEwen, A https://orcid.org/0000-0001-8705-1190
dc.contributor.author	Ballinger, ML
dc.contributor.author	Young, M-A
dc.date.accessioned	2022-11-18T00:17:37Z
dc.date.available	2021-09-20
dc.date.available	2022-11-18T00:17:37Z
dc.date.issued	2022-01-01
dc.identifier.citation	European journal of human genetics : EJHG, 2022, 30, (3), pp. 363-366
dc.identifier.issn	1018-4813
dc.identifier.issn	1476-5438
dc.identifier.uri	http://hdl.handle.net/10453/163573
dc.description.abstract	Researchers and research participants increasingly support returning clinically actionable genetic research findings to participants, but researchers may lack the skills and resources to do so. In response, a genetic counsellor-led program to facilitate the return of clinically actionable findings to research participants was developed to fill the identified gap in research practice and meet Australian research guidelines. A steering committee of experts reviewed relevant published literature and liaised with researchers, research participants and clinicians to determine the scope of the program, as well as the structure, protocols and infrastructure. A program called My Research Results (MyRR) was developed, staffed by genetic counsellors with input from the steering committee, infrastructure services and a genomic advisory committee. MyRR is available to Human Research Ethics Committee approved studies Australia-wide and comprises genetic counselling services to notify research participants of clinically actionable research findings, support for researchers with developing an ethical strategy for managing research findings and an online information platform. The results notification strategy is an evidence-based two-step model, which has been successfully used in other Australian studies. MyRR is a translational program supporting researchers and research participants to access clinically actionable research findings.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SPRINGERNATURE
dc.relation.ispartof	European journal of human genetics : EJHG
dc.relation.isbasedon	10.1038/s41431-021-00973-z
dc.rights	info:eu-repo/semantics/openAccess
dc.rights	This version of the article has been accepted for publication, after peer review (when applicable) and is subject to Springer Nature’s AM terms of use, but is not the Version of Record and does not reflect post-acceptance improvements, or any corrections. This is an Accepted Manuscript of an article published in European Journal of Human Genetics, available online: 10.1038/s41431-021-00973-z
dc.subject	0604 Genetics, 1103 Clinical Sciences
dc.subject.classification	Genetics & Heredity
dc.subject.mesh	Australia
dc.subject.mesh	Ethics Committees, Research
dc.subject.mesh	Genetic Counseling
dc.subject.mesh	Genome
dc.subject.mesh	Genomics
dc.subject.mesh	Humans
dc.subject.mesh	Humans
dc.subject.mesh	Genetic Counseling
dc.subject.mesh	Genomics
dc.subject.mesh	Genome
dc.subject.mesh	Ethics Committees, Research
dc.subject.mesh	Australia
dc.title	My Research Results: a program to facilitate return of clinically actionable genomic research findings.
dc.type	Journal Article
utslib.citation.volume	30
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	*
pubs.consider-herdc	false
dc.date.updated	2022-11-18T00:17:35Z
pubs.issue	3
pubs.publication-status	Published
pubs.volume	30
utslib.citation.issue	3

Abstract:

Researchers and research participants increasingly support returning clinically actionable genetic research findings to participants, but researchers may lack the skills and resources to do so. In response, a genetic counsellor-led program to facilitate the return of clinically actionable findings to research participants was developed to fill the identified gap in research practice and meet Australian research guidelines. A steering committee of experts reviewed relevant published literature and liaised with researchers, research participants and clinicians to determine the scope of the program, as well as the structure, protocols and infrastructure. A program called My Research Results (MyRR) was developed, staffed by genetic counsellors with input from the steering committee, infrastructure services and a genomic advisory committee. MyRR is available to Human Research Ethics Committee approved studies Australia-wide and comprises genetic counselling services to notify research participants of clinically actionable research findings, support for researchers with developing an ethical strategy for managing research findings and an online information platform. The results notification strategy is an evidence-based two-step model, which has been successfully used in other Australian studies. MyRR is a translational program supporting researchers and research participants to access clinically actionable research findings.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/163573