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患者对全基因组测序在其医疗保健中的感知效用:MedSeq项目的研究结果。

Patients' perceived utility of whole-genome sequencing for their healthcare: findings from the MedSeq project.

作者信息

Lupo Philip J, Robinson Jill O, Diamond Pamela M, Jamal Leila, Danysh Heather E, Blumenthal-Barby Jennifer, Lehmann Lisa Soleymani, Vassy Jason L, Christensen Kurt D, Green Robert C, McGuire Amy L

机构信息

Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine, Houston, TX 77030, USA.

Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.

出版信息

Per Med. 2016 Jan 1;13(1):13-20. doi: 10.2217/pme.15.45. Epub 2016 Jan 8.

DOI:10.2217/pme.15.45
PMID:27019659
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4806392/
Abstract

AIM

To evaluate patients' expectations regarding the perceived utility of whole-genome sequencing (WGS).

MATERIALS & METHODS: We used latent class analysis to characterize individuals enrolled in the MedSeq Project based on their perceived utility of WGS. Multinomial logistic regression was used to evaluate associations between participant characteristics and latent classes.

RESULTS

Findings characterized participants into one of three perceived utility groups: enthusiasts, who had a high probability of agreement with all utility items (23%); health conscious, who perceived utility in medically related areas (60%) or skeptics, who had a low probability of agreement with utility items (17%). Trust significantly predicted latent class.

CONCLUSION

Understanding differences in perceived utility of WGS may inform strategies for uptake of this technology.

摘要

目的

评估患者对全基因组测序(WGS)感知效用的期望。

材料与方法

我们使用潜在类别分析,根据全基因组测序的感知效用对参与MedSeq项目的个体进行特征描述。多项逻辑回归用于评估参与者特征与潜在类别之间的关联。

结果

研究结果将参与者分为三个感知效用组之一:热心者,他们对所有效用项目高度认同的可能性很高(23%);健康意识者,他们在医学相关领域感知到效用(60%);或怀疑者,他们对效用项目认同的可能性很低(17%)。信任显著预测潜在类别。

结论

了解全基因组测序感知效用的差异可能为该技术的应用策略提供信息。

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本文引用的文献

1
'Someday it will be the norm': physician perspectives on the utility of genome sequencing for patient care in the MedSeq Project.“终有一天这将成为常态”:医生对MedSeq项目中基因组测序在患者护理中的效用的看法。
Per Med. 2015;12(1):23-32. doi: 10.2217/pme.14.68.
2
A framework for analyzing the ethics of disclosing genetic research findings.分析基因研究结果披露伦理问题的框架。
J Law Med Ethics. 2014 Summer;42(2):190-207. doi: 10.1111/jlme.12135.
3
Personal utility in genomic testing: is there such a thing?基因检测中的个人效用:有这样的东西吗?
J Med Ethics. 2015 Apr;41(4):322-6. doi: 10.1136/medethics-2013-101887. Epub 2014 May 28.
4
The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine.MedSeq 项目:将全基因组测序整合到临床医学中的一项随机试验。
Trials. 2014 Mar 20;15:85. doi: 10.1186/1745-6215-15-85.
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Adult genetic risk screening.成人遗传风险筛查。
Annu Rev Med. 2014;65:1-17. doi: 10.1146/annurev-med-111212-144716. Epub 2013 Nov 4.
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Implementing genomic medicine in the clinic: the future is here.将基因组医学付诸临床实践:未来已来。
Genet Med. 2013 Apr;15(4):258-67. doi: 10.1038/gim.2012.157. Epub 2013 Jan 10.
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Genet Med. 2012 Jul;14(7):681-7. doi: 10.1038/gim.2012.22.
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Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility.为阿尔茨海默病基因检测支付费用的意愿:一种个人效用的衡量方式。
Genet Test Mol Biomarkers. 2011 Dec;15(12):871-5. doi: 10.1089/gtmb.2011.0028. Epub 2011 Jul 12.