Australian human research ethics committee members' confidence in reviewing genomic research applications.

Pysar, R; Wallingford, CK; Boyle, J; Campbell, SB; Eckstein, L; McWhirter, R; Terrill, B; Jacobs, C; McInerney-Leo, AM

Australian human research ethics committee members' confidence in reviewing genomic research applications.

Pysar, R Wallingford, CK Boyle, J Campbell, SB Eckstein, L McWhirter, R Terrill, B Jacobs, C

McInerney-Leo, AM

Permalink

Publisher:: SPRINGERNATURE
Publication Type:: Journal Article
Citation:: Eur J Hum Genet, 2021, 29, (12), pp. 1811-1818
Issue Date:: 2021-12

Open Access

Copyright Clearance Process

Recently Added
In Progress
Open Access

This item is open access.

The embargo period expires on 31 Mar 2022

Adobe PDF

Download full textAdobe PDF (385.19 kB)

View on publisher's site

View statistics

Full metadata record

Field	Value	Language
dc.contributor.author	Pysar, R
dc.contributor.author	Wallingford, CK
dc.contributor.author	Boyle, J
dc.contributor.author	Campbell, SB
dc.contributor.author	Eckstein, L
dc.contributor.author	McWhirter, R
dc.contributor.author	Terrill, B
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080
dc.contributor.author	McInerney-Leo, AM
dc.date.accessioned	2022-01-28T18:10:59Z
dc.date.available	2021-08-12
dc.date.available	2022-01-28T18:10:59Z
dc.date.issued	2021-12
dc.identifier.citation	Eur J Hum Genet, 2021, 29, (12), pp. 1811-1818
dc.identifier.issn	1018-4813
dc.identifier.issn	1476-5438
dc.identifier.uri	http://hdl.handle.net/10453/153771
dc.description.abstract	Human research ethics committees (HRECs) are evaluating increasing quantities of genomic research applications with complex ethical considerations. Genomic confidence is reportedly low amongst many non-genetics-experts; however, no studies have evaluated genomic confidence levels in HREC members specifically. This study used online surveys to explore genomic confidence levels, predictors of confidence, and genomics resource needs of members from 185 HRECs across Australia. Surveys were fully or partially completed by 145 members. All reported having postgraduate 94 (86%) and/or bachelor 15 (14%) degrees. Participants consisted mainly of researchers (n = 45, 33%) and lay members (n = 41, 30%), affiliated with either public health services (n = 73, 51%) or public universities (n = 31, 22%). Over half had served their HREC [Formula: see text]3 years. Fifty (44%) reviewed genomic studies [Formula: see text]3 times annually. Seventy (60%) had undertaken some form of genomic education. While most (94/103, 91%) had high genomic literacy based on familiarity with genomic terms, average genomic confidence scores (GCS) were moderate (5.7/10, n = 119). Simple linear regression showed that GCS was positively associated with years of HREC service, frequency of reviewing genomic applications, undertaking self-reported genomic education, and familiarity with genomic terms (p < 0.05 for all). Conversely, lay members and/or those relying on others when reviewing genomic studies had lower GCSs (p < 0.05 for both). Most members (n = 83, 76%) agreed further resources would be valuable when reviewing genomic research applications, and online courses and printed materials were preferred. In conclusion, even well-educated HREC members familiar with genomic terms lack genomic confidence, which could be enhanced with additional genomic education and/or resources.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SPRINGERNATURE
dc.relation.ispartof	Eur J Hum Genet
dc.relation.isbasedon	10.1038/s41431-021-00951-5
dc.rights	info:eu-repo/semantics/embargoedAccess
dc.subject	0604 Genetics, 1103 Clinical Sciences
dc.subject.classification	Genetics & Heredity
dc.title	Australian human research ethics committee members' confidence in reviewing genomic research applications.
dc.type	Journal Article
utslib.citation.volume	29
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	*
utslib.copyright.embargo	2022-03-31T00:00:00+1000Z
dc.date.updated	2022-01-28T18:10:53Z
pubs.issue	12
pubs.publication-status	Published
pubs.volume	29
utslib.citation.issue	12

Abstract:

Human research ethics committees (HRECs) are evaluating increasing quantities of genomic research applications with complex ethical considerations. Genomic confidence is reportedly low amongst many non-genetics-experts; however, no studies have evaluated genomic confidence levels in HREC members specifically. This study used online surveys to explore genomic confidence levels, predictors of confidence, and genomics resource needs of members from 185 HRECs across Australia. Surveys were fully or partially completed by 145 members. All reported having postgraduate 94 (86%) and/or bachelor 15 (14%) degrees. Participants consisted mainly of researchers (n = 45, 33%) and lay members (n = 41, 30%), affiliated with either public health services (n = 73, 51%) or public universities (n = 31, 22%). Over half had served their HREC [Formula: see text]3 years. Fifty (44%) reviewed genomic studies [Formula: see text]3 times annually. Seventy (60%) had undertaken some form of genomic education. While most (94/103, 91%) had high genomic literacy based on familiarity with genomic terms, average genomic confidence scores (GCS) were moderate (5.7/10, n = 119). Simple linear regression showed that GCS was positively associated with years of HREC service, frequency of reviewing genomic applications, undertaking self-reported genomic education, and familiarity with genomic terms (p < 0.05 for all). Conversely, lay members and/or those relying on others when reviewing genomic studies had lower GCSs (p < 0.05 for both). Most members (n = 83, 76%) agreed further resources would be valuable when reviewing genomic research applications, and online courses and printed materials were preferred. In conclusion, even well-educated HREC members familiar with genomic terms lack genomic confidence, which could be enhanced with additional genomic education and/or resources.

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

http://hdl.handle.net/10453/153771