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Australian human research ethics committee members’ confidence in reviewing genomic research applications
European Journal of Human Genetics ( IF 3.7 ) Pub Date : 2021-08-26 , DOI: 10.1038/s41431-021-00951-5
Ryan Pysar 1, 2 , Courtney K Wallingford 3 , Jackie Boyle 4 , Scott B Campbell 5 , Lisa Eckstein 6 , Rebekah McWhirter 7 , Bronwyn Terrill 8, 9 , Chris Jacobs 1 , Aideen M McInerney-Leo 3
Affiliation  

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 \(\ge\)3 years. Fifty (44%) reviewed genomic studies \(\le\)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.



中文翻译:

澳大利亚人类研究伦理委员会成员对审查基因组研究申请的信心

人类研究伦理委员会 (HREC) 正在评估越来越多的具有复杂伦理考虑的基因组研究应用。据报道,许多非遗传学专家对基因组的信心很低;然而,没有研究专门评估 HREC 成员的基因组置信水平。本研究使用在线调查来探索澳大利亚 185 个 HREC 成员的基因组置信度、置信度预测因子和基因组学资源需求。145 名成员全部或部分完成了调查。所有人都报告拥有 94 个 (86%) 研究生学位和/或 15 个 (14%) 学士学位。参与者主要由研究人员(n  = 45, 33%)和非专业人士(n  = 41, 30%)组成,他们隶属于公共卫生服务(n = 73, 51%) 或公立大学 ( n  = 31, 22%)。超过一半的人已经为他们的 HREC \(\ge\)服务了3 年。五十 (44%) 人每年\(\le\) 3 次审查基因组研究。七十人 (60%) 接受过某种形式的基因组教育。虽然大多数 (94/103, 91%) 基于对基因组术语的熟悉程度具有较高的基因组素养,但平均基因组置信度分数 (GCS) 适中 (5.7/10, n  = 119)。简单线性回归表明,GCS 与 HREC 服务年限、审查基因组应用程序的频率、进行自我报告的基因组教育以及对基因组术语的熟悉程度呈正相关(p < 0.05 全部)。相反,外行成员和/或那些在审查基因组研究时依赖他人的人具有较低的 GCS(两者p  < 0.05)。大多数成员(n  = 83,76%)同意,在审查基因组研究应用程序时,更多资源将很有价值,并且首选在线课程和印刷材料。总之,即使是受过良好教育、熟悉基因组术语的 HREC 成员也缺乏基因组信心,这可以通过额外的基因组教育和/或资源来增强。

更新日期:2021-08-26
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