Abstract
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.
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Acknowledgments
YS was funded by an Erasmus Mundus Masters studentship, PB is funded by the Research Fund Flanders (FWO), and HCH is funded by the European Commission FP7 Marie Curie initiative. The authors thank the editor and two anonymous reviewers for their thoughtful and helpful comments.
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The authors declare that they have no conflict of interest.
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Su, Y., Howard, H.C. & Borry, P. Users’ motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories. J Community Genet 2, 135–146 (2011). https://doi.org/10.1007/s12687-011-0048-y
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DOI: https://doi.org/10.1007/s12687-011-0048-y