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Consumer Health Informatics Aspects of Direct-to-Consumer Personal Genomic Testing

机译：消费者健康信息学方面的直接消费者个人基因组测试

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This paper uses consumer health informatics as a framework to explore whether and how direct-to-consumer personal genomic testing can be regarded as a form of information which assists consumers to manage their health. It presents findings from qualitative content analysis of web sites that offer testing services, and of transcripts from focus groups conducted as part a study of the Australian public's expectations of personal genomics. Content analysis showed that service offerings have some features of consumer health information but lack consistency. Focus group participants were mostly unfamiliar with the specifics of test reports and related information services. Some of their ideas about aids to knowledge were in line with the benefits described on provider web sites, but some expectations were inflated. People were ambivalent about whether these services would address consumers' health needs, interests and contexts and whether they would support consumers' health self-management decisions and outcomes. There is scope for consumer health informatics approaches to refine the usage and the utility of direct-to-consumer personal genomic testing. Further research may focus on how uptake is affected by consumers' health literacy or by services' engagement with consumers about what they really want.
机译：本文采用消费者健康信息学作为探索无论是如何以及如何指导的信息，都可以被视为一种协助消费者管理健康的信息形式。它介绍了提供测试服务的网站的定性内容分析的结果，以及作为澳大利亚公众对个人基因组学期望的研究的一部分进行的焦点小组的成绩单。内容分析表明，服务产品具有消费者健康信息的一些特征，但缺乏一致性。焦点集团参与者大多陌生地与测试报告和相关信息服务的具体细节。他们关于援助知识的一些想法符合提供商网站上描述的福利，但有些期望膨胀。人们对这些服务是否会解决消费者的健康需求，利益和背景以及他们是否会支持消费者的卫生自我管理决策和结果的矛盾。消费者卫生信息学方法有范围，以优化使用和直接消费者个人基因组测试的效用。进一步的研究可能会关注消费者健康识字或通过与消费者的服务与消费者的关系如何影响他们真正想要的。

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