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What are people willing to pay for whole-genome sequencing information, and who decides what they receive?人们愿意为全基因组测序信息支付多少钱，又由谁来决定他们能得到什么信息呢？
Genet Med. 2016 Dec;18(12):1295-1302. doi: 10.1038/gim.2016.61. Epub 2016 Jun 2.
2
Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment.临床基因组测序中偶然发现结果反馈的社会偏好：一项离散选择实验
CMAJ. 2015 Apr 7;187(6):E190-E197. doi: 10.1503/cmaj.140697. Epub 2015 Mar 9.
3
Insurance companies are slow to cover next-generation sequencing.保险公司在承保下一代测序方面行动迟缓。
Nat Med. 2015 Mar;21(3):204-5. doi: 10.1038/nm0315-204.
4
Consumer familiarity, perspectives and expected value of personalized medicine with a focus on applications in oncology.消费者对个性化医疗的熟悉程度、看法及预期价值，重点关注肿瘤学中的应用。
Per Med. 2015 Jan 1;12(1):13-22. doi: 10.2217/pme.14.74.
5
Diagnostic clinical genome and exome sequencing.诊断性临床基因组和外显子组测序
N Engl J Med. 2014 Jun 19;370(25):2418-25. doi: 10.1056/NEJMra1312543.
6
Cancer patients acceptance, understanding, and willingness-to-pay for pharmacogenomic testing.癌症患者对药物基因组检测的接受度、理解程度和支付意愿。
Pharmacogenet Genomics. 2014 Jul;24(7):348-55. doi: 10.1097/FPC.0000000000000061.
7
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.
8
Clinical interpretation and implications of whole-genome sequencing.全基因组测序的临床解读及意义。
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9
A systematic review of the factors associated with interest in predictive genetic testing for obesity, type II diabetes and heart disease.对与肥胖、II型糖尿病和心脏病预测性基因检测兴趣相关因素的系统评价。
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10
Genomic testing to determine drug response: measuring preferences of the public and patients using Discrete Choice Experiment (DCE).基因组检测以确定药物反应：使用离散选择实验（DCE）衡量公众和患者的偏好。
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全基因组测序的价格可能在下降，但谁会接受测序呢？

The price of whole-genome sequencing may be decreasing, but who will be sequenced?

作者信息

Marshall Deborah A, MacDonald Karen V, Robinson Jill Oliver, Barcellos Lisa F, Gianfrancesco Milena, Helm Monica, McGuire Amy, Green Robert C, Douglas Michael P, Goldman Michael A, Phillips Kathryn A

机构信息

Department of Community Health Sciences, Room 3C56 Health Research Innovation Centre, University of Calgary, Calgary, Alberta, Canada.

Center for Medical Ethics & Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX, USA.

出版信息

Per Med. 2017 May;14(3):203-211. doi: 10.2217/pme-2016-0075. Epub 2017 May 23.

DOI:10.2217/pme-2016-0075
PMID:28993792
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5629976/
Abstract

AIM

Since whole-genome sequencing (WGS) information can have positive and negative personal utility for individuals, we examined predictors of willingness to pay (WTP) for WGS.

PATIENTS & METHODS: We surveyed two independent populations: adult patients (n = 203) and college seniors (n = 980). Ordinal logistic regression models were used to characterize the relationship between predictors and WTP.

RESULTS

Sex, age, education, income, genomic knowledge and knowing someone who had genetic testing or having had genetic testing done personally were associated with significantly higher WTP for WGS. After controlling for income and education, males were willing to pay more for WGS than females.

CONCLUSION

Differences in WTP may impact equity, coverage, affordability and access, and should be anticipated by public dialog about related health policy.

摘要

目的

由于全基因组测序（WGS）信息对个人可能具有正负两方面的个人效用，我们研究了为WGS支付意愿（WTP）的预测因素。

患者与方法

我们对两个独立人群进行了调查：成年患者（n = 203）和大学四年级学生（n = 980）。使用有序逻辑回归模型来描述预测因素与WTP之间的关系。

结果

性别、年龄、教育程度、收入、基因组知识以及认识进行过基因检测的人或个人曾进行过基因检测与为WGS支付意愿显著更高相关。在控制收入和教育程度后，男性为WGS支付的意愿高于女性。

结论

WTP的差异可能会影响公平性、覆盖范围、可承受性和可及性，在有关相关卫生政策的公众对话中应予以考虑。