University of Tasmania
Browse
147231 - Australian human research ethics committee members confidence.pdf (456.29 kB)

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

Download (456.29 kB)
journal contribution
posted on 2023-05-21, 03:19 authored by Pysar, R, Wallingford, CK, Boyle, J, Campbell, SB, Lisa EcksteinLisa Eckstein, McWhirter, R, Terrill, B, Jacobs, C, McInerney-Leo, AM
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.

Funding

Australian Research Council

History

Publication title

European Journal of Human Genetics

Volume

29

Issue

12

Pagination

1811-1818

ISSN

1018-4813

Department/School

Faculty of Law

Publisher

Nature Publishing Group

Place of publication

London, England

Rights statement

© The Author(s), under exclusive licence to European Society of Human Genetics 2021. Author post-prints of subscription articles are subject to Springer Nature re-use terms

Repository Status

  • Open

Socio-economic Objectives

Treatment of human diseases and conditions

Usage metrics

    University Of Tasmania

    Exports

    RefWorks
    BibTeX
    Ref. manager
    Endnote
    DataCite
    NLM
    DC