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Users' motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2011 (English)In: Journal of community genetics, ISSN 1868-6001, Vol. 2, no 3, 135-46 p.Article in journal (Refereed) Published
Abstract [en]

The relatively rapid growth of the direct-to-consumer (DTC) genetic testing market in the last few years has led to increasing attention from both the scientific community and policy makers. One voice often missing in these debates, however, is that of the actual user of these genetic testing services. In order to gain a better picture of the motivations and expectations that propel individuals to purchase DTC genome-wide testing, we conducted an exploratory study based on users' personal stories. Through qualitative content analysis of users' personal stories found on Internet blogs and DTC genetic testing companies' websites, we identified five major sets of motivations and expectations towards DTC genome-wide testing. These themes are related to (1) health, (2) curiosity and fascination, (3) genealogy, (4) contributing to research, and (5) recreation. Obtaining such information can help us to understand how users consider genome-wide testing and forms the basis for further research.

Place, publisher, year, edition, pages
2011. Vol. 2, no 3, 135-46 p.
National Category
Medical Ethics
URN: urn:nbn:se:uu:diva-245823DOI: 10.1007/s12687-011-0048-yPubMedID: 22109820OAI: oai:DiVA.org:uu-245823DiVA: diva2:791579
Available from: 2015-03-01 Created: 2015-03-01 Last updated: 2015-03-01

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Howard, Heidi C
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