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公众对直接面向消费者的基因检测的态度。

Public Attitudes Toward Direct to Consumer Genetic Testing.

作者信息

Ruhl Grayson L, Hazel James W, Clayton Ellen Wright, Malin Bradley A

机构信息

Vanderbilt University, Nashville, Tennessee, USA.

出版信息

AMIA Annu Symp Proc. 2020 Mar 4;2019:774-783. eCollection 2019.

PMID:32308873
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7153088/
Abstract

Direct to consumer genetic testing (DTC-GT) is an emerging service that allows individuals to have their DNA tested without having to consult a healthcare provider. DTC-GT can provide insight into various aspects about an individual, including their health and ancestry. However, testing may pose privacy risks and yield distressing results. Despite the growing popularity of DTC-GT, public attitudes toward such services remain largely ill-defined. Using Amazon Mechanical Turk, we administered a web-based survey to over 1,000 individuals to obtain intuition into public attitudes about DTC-GT. S urvey questions were grounded in a literature review of people's views about DTC-GT. The results of the survey indicated that respondents were interested in DTC-GT as a possible way to gain insight about health, ancestry, and family relationships, as well as advance research. Despite this, respondents were concerned that DTC-GT companies and other users of their DTC-GT data would infringe upon their privacy.

摘要

直接面向消费者的基因检测(DTC-GT)是一项新兴服务,它使个人无需咨询医疗保健提供者即可进行DNA检测。DTC-GT可以深入了解个人的各个方面,包括他们的健康状况和祖先信息。然而,检测可能会带来隐私风险并产生令人苦恼的结果。尽管DTC-GT越来越受欢迎,但公众对这类服务的态度在很大程度上仍不明确。我们通过亚马逊土耳其机器人平台,对1000多名个人进行了一项基于网络的调查,以了解公众对DTC-GT的态度。调查问卷的问题基于对人们对DTC-GT看法的文献综述。调查结果表明,受访者对DTC-GT感兴趣,认为它是一种了解健康、祖先信息和家庭关系以及推动研究的可能途径。尽管如此,受访者担心DTC-GT公司及其DTC-GT数据的其他使用者会侵犯他们的隐私。

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本文引用的文献

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Who Knows What, and When?: A Survey of the Privacy Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies.谁知道什么信息、何时被知晓?:对美国直接面向消费者的基因检测公司所提供隐私政策的一项调查。
Cornell J Law Public Policy. 2018;28(1):35-66.
2
False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care.直接面向消费者的基因检测产生的假阳性结果强调了为适当的患者护理进行临床确认检测的重要性。
Genet Med. 2018 Dec;20(12):1515-1521. doi: 10.1038/gim.2018.38. Epub 2018 Mar 22.
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Don’t Try This at Home: the FDA’s Restrictive Regulation of Home Testing Devices.请勿在家尝试:美国食品药品监督管理局对家用检测设备的严格监管。
Duke Law J. 2017 Nov;67(2):383-426.
4
The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.研究参与者视角下的基因组队列研究实施:定量文献的系统评价。
Transl Behav Med. 2018 Jan 29;8(1):119-129. doi: 10.1093/tbm/ibx056.
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Direct-to-consumer DNA testing: the fallout for individuals and their families unexpectedly learning of their donor conception origins.直接面向消费者的DNA检测:个人及其家庭意外得知其捐赠受孕起源的后果。
Hum Fertil (Camb). 2018 Dec;21(4):225-228. doi: 10.1080/14647273.2017.1339127. Epub 2017 Jul 11.
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The Impact of Whole-Genome Sequencing on the Primary Care and Outcomes of Healthy Adult Patients: A Pilot Randomized Trial.全基因组测序对健康成年患者的初级保健和结局的影响:一项先导随机试验。
Ann Intern Med. 2017 Jun 27;167(3):159-169. doi: 10.7326/M17-0188. Print 2017 Aug 1.
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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.公众对生物样本库研究中的知情同意和数据共享的态度:美国一项大型多地点实验性调查
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Beyond Our Borders? Public Resistance to Global Genomic Data Sharing.超越国界?公众对全球基因组数据共享的抵制。
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