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Australian human research ethics committee members’ confidence in reviewing genomic research applications

Pysar, R, Wallingford, CK, Boyle, J, Campbell, SB, Eckstein, L ORCID: 0000-0002-7161-7521, McWhirter, R, Terrill, B, Jacobs, C and McInerney-Leo, AM 2021 , 'Australian human research ethics committee members’ confidence in reviewing genomic research applications' , European Journal of Human Genetics , pp. 1-8 , doi: 10.1038/s41431-021-00951-5.

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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.

Item Type: Article
Authors/Creators:Pysar, R and Wallingford, CK and Boyle, J and Campbell, SB and Eckstein, L and McWhirter, R and Terrill, B and Jacobs, C and McInerney-Leo, AM
Keywords: Human Research Ethics Committees, genomic research
Journal or Publication Title: European Journal of Human Genetics
Publisher: Nature Publishing Group
ISSN: 1018-4813
DOI / ID Number: 10.1038/s41431-021-00951-5
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