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是否披露?临床基因组学专业人员对从基因组研究中返还偶然发现的观点。

To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.

机构信息

Research Center, King Fahad Medical City, P.O. Box. 59046, Riyadh, 11525, Saudi Arabia.

College of Medicine, Prince Sattam Bin Abdulaziz University, Riyadh, Saudi Arabia.

出版信息

BMC Med Ethics. 2021 Jul 27;22(1):101. doi: 10.1186/s12910-021-00670-y.

DOI:10.1186/s12910-021-00670-y
PMID:34315465
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8314473/
Abstract

BACKGROUND

Clinical genomic professionals are increasingly facing decisions about returning incidental findings (IFs) from genetic research. Although previous studies have shown that research participants are interested in receiving IFs, yet there has been an argument about the extent of researcher obligation to return IFs. We aimed in this study to explore the perspectives of clinical genomics professionals toward returning incidental findings from genomic research.

METHODS

We conducted a national survey of a sample (n = 113) of clinical genomic professionals using a convenient sampling. A self-administered questionnaire was used to explore their attitudes toward disclosure of IFs, their perception of the duties to return IFs and identifying the barriers for disclosure of IFs. A descriptive analysis was employed to describe participants' responses.

RESULTS

Sixty-five (57.5%) respondents had faced IFs in their practice and 31 (27.4%) were not comfortable in discussing IFs with their research subjects. Less than one-third of the respondents reported the availability of guidelines governing IFs. The majority 84 (80%) and 69 (62.7%) of the study participants indicated they would return the IFs if the risk of disease threat ≥ 50% and 6-49%, respectively and 36 (31.9%) reported they have no obligation to return IFs.

CONCLUSION

Clinical genomics professionals have positive attitudes and perceptions toward the returning IFs from genomic research, yet some revealed no duty to do so. Detailed guidelines must be established to provide insights into how genomics professionals should be handled IFs.

摘要

背景

临床基因组专业人员越来越多地面临着从遗传研究中返回偶然发现(IFs)的决策。尽管之前的研究表明研究参与者有兴趣接收 IFs,但对于研究人员归还 IFs 的义务程度存在争议。我们旨在本研究中探讨临床基因组专业人员对从基因组研究中返回偶然发现的看法。

方法

我们使用方便抽样对临床基因组专业人员进行了一项全国性调查(n=113)。使用自我管理问卷来探讨他们对披露 IFs 的态度、他们对归还 IFs 的职责的看法以及识别披露 IFs 的障碍。采用描述性分析来描述参与者的反应。

结果

65 名(57.5%)受访者在实践中遇到过 IFs,31 名(27.4%)在与研究对象讨论 IFs 时感到不舒服。不到三分之一的受访者报告了指导 IFs 的指南。大多数 84 名(80%)和 69 名(62.7%)的研究参与者表示,如果疾病威胁风险≥50%和 6-49%,他们将归还 IFs,而 36 名(31.9%)表示他们没有义务归还 IFs。

结论

临床基因组专业人员对从基因组研究中返回 IFs 持有积极的态度和看法,但有些则表示没有义务这样做。必须制定详细的准则,深入了解基因组专业人员应如何处理 IFs。

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