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Australian human research ethics committee members' confidence in reviewing genomic research applications.
Pysar, Ryan; Wallingford, Courtney K; Boyle, Jackie; Campbell, Scott B; Eckstein, Lisa; McWhirter, Rebekah; Terrill, Bronwyn; Jacobs, Chris; McInerney-Leo, Aideen M.
Afiliação
  • Pysar R; Genetic Counseling, Graduate School of Health, University of Technology Sydney, Sydney, NSW, Australia. Ryan.Pysar@health.nsw.gov.au.
  • Wallingford CK; Centre for Clinical Genetics, Sydney Children's Hospital, Randwick, NSW, Australia. Ryan.Pysar@health.nsw.gov.au.
  • Boyle J; University of Queensland Diamantina Institute, University of Queensland, Dermatology Research Centre, Woolloongabba, QLD, Australia.
  • Campbell SB; NSW Genetics of Learning Disability (GOLD) Service, Hunter Genetics, Waratah, NSW, Australia.
  • Eckstein L; Department of Nephrology, Princess Alexandra Hospital, Woolloongabba, QLD, Australia.
  • McWhirter R; Faculty of Law University of Tasmania, Hobart, TAS, Australia.
  • Terrill B; School of Medicine, Faculty of Health, Deakin University, Geelong, VIC, Australia.
  • Jacobs C; Kinghorn Centre for Clinical Genomics, Garvan Institute of Medical Research, Darlinghurst, NSW, Australia.
  • McInerney-Leo AM; St Vincent's Clinical School, UNSW Sydney, Sydney, NSW, Australia.
Eur J Hum Genet ; 29(12): 1811-1818, 2021 12.
Article em En | MEDLINE | ID: mdl-34446835
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.
Assuntos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Comissão de Ética / Genética Humana Tipo de estudo: Prognostic_studies Limite: Adult / Female / Humans / Male / Middle aged País/Região como assunto: Oceania Idioma: En Ano de publicação: 2021 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Comissão de Ética / Genética Humana Tipo de estudo: Prognostic_studies Limite: Adult / Female / Humans / Male / Middle aged País/Região como assunto: Oceania Idioma: En Ano de publicação: 2021 Tipo de documento: Article