Gray Kathleen, Stephen Remya, Terrill Bronwyn, Wilson Brenda, Middleton Anna, Tytherleigh Rigan, Turbitt Erin, Gaff Clara, Savard Jacqueline, Hickerton Chriselle, Newson Ainsley, Metcalfe Sylvia
The University of Melbourne, VIC Australia.
Garvan Institute of Medical Research, Sydney, NSW Australia.
Stud Health Technol Inform. 2017;245:89-93.
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.
本文以消费者健康信息学为框架，探讨直接面向消费者的个人基因组检测能否以及如何被视为一种帮助消费者管理自身健康的信息形式。本文呈现了对提供检测服务的网站进行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研究一部分的焦点小组访谈记录。内容分析表明，所提供的服务具有一些消费者健康信息的特征，但缺乏一致性。焦点小组参与者大多不熟悉检测报告及相关信息服务的具体内容。他们关于知识辅助工具的一些想法与供应商网站上描述的益处相符，但有些期望过高。人们对于这些服务是否能满足消费者的健康需求、兴趣和背景，以及是否能支持消费者的健康自我管理决策和结果，态度矛盾。消费者健康信息学方法有空间来优化直接面向消费者的个人基因组检测的使用和效用。进一步的研究可聚焦于消费者的健康素养如何影响检测的接受程度，或者服务机构如何就消费者真正想要的内容与他们进行互动。
