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- Borry, Pascal, et al.
(författare)
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Where are you going, where have you been : a recent history of the direct-to-consumer genetic testing market.
- 2010
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Ingår i: Journal of community genetics. - : Springer Science and Business Media LLC. - 1868-310X .- 1868-6001. ; 1:3, s. 101-106
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Tidskriftsartikel (refereegranskat)abstract
- In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) recent changes in the DTC GT market; and (4) the recent events that may have an impact on the regulatory oversight of DTC genetic testing and the future evolution of this market. This review of factors suggests that despite the possibility of a change of business model as well as increased regulation, the commercialization of genetic testing is here to stay. As such it is important to pay close attention not only to the science underlying these tests but also to the ethical, legal, and social issues.
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- Borry, Pascal, et al.
(författare)
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Health-related direct-to-consumer genetic testing : a review of companies' policies with regard to genetic testing in minors.
- 2010
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Ingår i: Familial Cancer. - : Springer Science and Business Media LLC. - 1389-9600 .- 1573-7292. ; 9:1, s. 51-9
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Tidskriftsartikel (refereegranskat)abstract
- More and more companies are advertising and selling genetic tests directly to consumers. Considering the ethical, legal, and psychological concerns surrounding genetic testing in minors, a study of companies' websites was performed in order to describe and analyze their policies with respect to this issue. Of the 29 companies analyzed, 13 did not provide any information about this matter, eight companies allowed genetic testing upon parental request, four companies stated that their website is not directed to children under 18 years, and four companies suggested that in order to be tested, applicants should have reached the age of legal majority. If private companies offer genetic tests which are also offered in a clinical setting, can they be expected to adhere to the existing clinical guidelines with regard to these tests? If so, a certain ambiguity exists. Many companies are emphasizing in their disclaimers that their services are not medical services and should not be used as a basis for making medical decisions. Nonetheless, it remains debatable whether genetic testing in minors would be appropriate in this context. In line with the Advisory Committee on Genetic Testing, the Human Genetics Commission addressed the problem of non-consensual testing and recommended not to supply genetic testing services directly to those under the age of 16 or to those not able to make a competent decision regarding testing.
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- Su, Yeyang, et al.
(författare)
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Users' motivations to purchase direct-to-consumer genome-wide testing : an exploratory study of personal stories.
- 2011
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Ingår i: Journal of community genetics. - : Springer Science and Business Media LLC. - 1868-6001 .- 1868-310X. ; 2:3, s. 135-46
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Tidskriftsartikel (refereegranskat)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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