What is it about?
This article discusses the beginning of so-called direct-to-consumer (DTC) genetic tests offered online, arguing that these tests blur several boundaries: That between experts and laypeople, between medical and non-medical, and between empowerment and protectionism. It is this "in-betweenness" of these tests that renders their governance so challenging.
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Why is it important?
In this article we argued that DTC genetic tests online should not, and cannot, be regulated by transposing the frameworks from the clinical genetics era to online genetic tests. How they can be regulated effectively, striking a good balance between minimising risks to test-takers and avoiding undue paternalism, is still an open challenge.
Read the Original
This page is a summary of: Misdirected precaution, Nature, November 2008, Springer Science + Business Media,
DOI: 10.1038/456034a.
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Resources
Regulating genomic information needs new approaches (2011)
A genome as information is very different to a genetic test, but in the debate over DTC genetic tests there is a confusion and conflation of the two. The solution of making DTC genetic services only available through a physician both overemphasises the medical value of the genome analysis and also minimises the importance of appropriate quality standards.
Who is afraid of more informed patients? Public fear mongering by the Swiss Academy of Medical Sciences (2013)
The translation of knowledge into health-improving practices in the clinic and beyond will require the distribution of knowledge using open access tools and web-based solutions wherever reasonably possible. Such a measure will provide a useful basis for fruitful collaborations between better informed patients and better prepared physicians.
Why the World Keeps Talking About 23andMe (2013)
23andMe's way of operating is also so distressing for regulators because the results given to customers cannot be neatly teased apart into health-related and non-health-related information, contrary to what 23andMe is trying to do now. The notion that clinical utility is the best measure of the robustness of communicating genetic risk data to customers is like saying the decibel is the best way to measure the effects of a violin concerto.
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