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Consumer health informatics aspects of direct-to-consumer personal genomic testing

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conference contribution
posted 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.

History

Volume

245

Pagination

89-93

Location

Hangzhou, China

Open access

  • Yes

Start date

2017-08-21

End date

2017-08-25

ISSN

0926-9630

eISSN

1879-8365

ISBN-13

9781614998297

ISBN-10

1614998302

Language

eng

Publication classification

E1 Full written paper - refereed

Editor/Contributor(s)

Gundlapalli AV, Jaulent M-C, Zhao D

Title of proceedings

Medinfo 2017 : precision healthcare through informatics : proceedings of the 16th World Congress on Medical and Health Informatics

Event

Medical and Health Informatics. World congress (16th : 2017 : Hangzhou, China)

Publisher

IOS Press

Place of publication

Amsterdam, The Netherlands

Series

Studies in health technology and informatics

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