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

Autor: Pysar R; Genetic Counseling, Graduate School of Health, University of Technology Sydney, Sydney, NSW, Australia. Ryan.Pysar@health.nsw.gov.au.; Centre for Clinical Genetics, Sydney Children's Hospital, Randwick, NSW, Australia. Ryan.Pysar@health.nsw.gov.au., Wallingford CK; University of Queensland Diamantina Institute, University of Queensland, Dermatology Research Centre, Woolloongabba, QLD, Australia., Boyle J; NSW Genetics of Learning Disability (GOLD) Service, Hunter Genetics, Waratah, NSW, Australia., Campbell SB; Department of Nephrology, Princess Alexandra Hospital, Woolloongabba, QLD, Australia., Eckstein L; Faculty of Law University of Tasmania, Hobart, TAS, Australia., McWhirter R; School of Medicine, Faculty of Health, Deakin University, Geelong, VIC, Australia., Terrill B; Kinghorn Centre for Clinical Genomics, Garvan Institute of Medical Research, Darlinghurst, NSW, Australia.; St Vincent's Clinical School, UNSW Sydney, Sydney, NSW, Australia., Jacobs C; Genetic Counseling, Graduate School of Health, University of Technology Sydney, Sydney, NSW, Australia., McInerney-Leo AM; University of Queensland Diamantina Institute, University of Queensland, Dermatology Research Centre, Woolloongabba, QLD, Australia. a.mcinerney@uq.edu.au.
Jazyk: angličtina
Zdroj: European journal of human genetics : EJHG [Eur J Hum Genet] 2021 Dec; Vol. 29 (12), pp. 1811-1818. Date of Electronic Publication: 2021 Aug 26.
DOI: 10.1038/s41431-021-00951-5
Abstrakt: 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.
(© 2021. The Author(s), under exclusive licence to European Society of Human Genetics.)
Databáze: MEDLINE
Externí odkaz: