savard-consumerhealthinformatics-2017.pdf (156.16 kB)
Consumer health informatics aspects of direct-to-consumer personal genomic testing
conference contributionposted on 2017-01-01, 00:00 authored by K Gray, R Stephen, B Terrill, B Wilson, A Middleton, R Tytherleigh, E Turbitt, C Gaff, Jacqueline SavardJacqueline Savard, C Hickerton, A Newson, S Metcalfe
This paper uses consumer health informatics as a framework to explore whether and how direct-to-consumerpersonal 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.