Literature DB >> 23154382

Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study.

E Vayena1, E Gourna, J Streuli, E Hafen, B Prainsack.   

Abstract

AIMS: This study explores attitudes, motivations and self-reported impact in connection with direct-to-consumer (DTC) genomic testing amongst a group of life scientists in Switzerland.
METHODS: Data were collected through: (1) a self-completion online questionnaire, and (2) semi-structured qualitative interviews. Forty participants completed the questionnaire and 10 were interviewed.
RESULTS: Curiosity was mentioned as the primary reason for undergoing testing, while less significance was attributed to receiving actionable health information. The opportunity to contribute to research ranked high as a motive for testing. Overall, participants assessed their experience with the test as positive and were willing to recommend it to others. Some reported that the testing had an impact on how they view their health, but only a third of participants planned on showing the results to health practitioners. Participants consistently referred to 'fun' when describing several aspects of the testing experience. The 'fun factor' manifested itself in different phases of the process, including the motivation for taking the test, receiving the information and putting the test results to use (including sharing and discussing it with others). This finding suggests the need to further explore the concept of personal utility in DTC genomics.
CONCLUSIONS: Although this group is not representative of the broader population due to both their scientific expertise and their willingness to try out a controversial new technology, their experiences provide valuable insights into the role of personal curiosity and altruism (fostering medical research) as motivations for testing and the utility attributed to both.
Copyright © 2012 S. Karger AG, Basel.

Entities:  

Mesh:

Year:  2012        PMID: 23154382     DOI: 10.1159/000343792

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  20 in total

1.  Captious certainties: makings, meanings and misreadings of consumer-oriented genetic testing.

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2.  Awareness, attitudes and perspectives of direct-to-consumer genetic testing in Greece: a survey of potential consumers.

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5.  Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

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6.  Motivations of participants in the citizen science of microbiomics: data from the British Gut Project.

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7.  Direct-to-consumer genomics on the scales of autonomy.

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8.  The undiscovered country: the future of integrating genomic information into the EHR.

Authors:  Joseph L Kannry; Marc S Williams
Journal:  Genet Med       Date:  2013-09-26       Impact factor: 8.822

9.  Beyond clinical utility: The multiple values of DTC genetics.

Authors:  Mauro Turrini; Barbara Prainsack
Journal:  Appl Transl Genom       Date:  2016-02-01

10.  Attitudes towards personal genomics among older Swiss adults: An exploratory study.

Authors:  Laura Mählmann; Christina Röcke; Angela Brand; Ernst Hafen; Effy Vayena
Journal:  Appl Transl Genom       Date:  2016-02-01
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