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Eur J Hum Genet. 2017 Aug;25(8):908-917. doi: 10.1038/ejhg.2017.75. Epub 2017 May 3.

Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

Author information

1
Technology and Policy, Vivactiv Ltd, Buckinghamshire, England.
2
East Lothian Health and Social Care Partnership, Haddington, UK.
3
Unimed-Rio Hospital, Rio de Janeiro, Brazil.
4
eHealth Group, Usher Institute for Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK.

Abstract

The declining cost of DNA sequencing has been accompanied by a proliferation of companies selling 'direct-to-consumer genetic testing' (DTC-GT) services. Many of these are marketed online as tools for enabling citizens to make more informed decisions about their health, wellness and lifestyle. We assessed the 'information for consumers' provided by these companies at the prepurchase stage, which could influence initial decisions to part with money, data or tissue samples. A scoping exercise revealed 65 DTC-GT companies advertising their services online to consumers in the United Kingdom, of which 15 met our inclusion criteria. We benchmarked their consumer information against the good practice principles developed by the UK Human Genetics Commission (HGC). No provider complied with all the HGC principles and overall levels of compliance varied considerably. Although consent for testing was discussed by all but one company, information about data reuse for research or other purposes was often sparse and consent options limited or unclear. Most did not provide supplementary support services to help users better understand or cope with the implications of test results. We provide recommendations for updating the preconsumer transparency aspects of the HGC guidelines to ensure their fitness-for-purpose in this rapidly changing market. We also recommend improving coordination between relevant governance bodies to ensure minimum standards of transparency, quality and accountability. Although DTC-GT has many potential benefits, close partnership between consumers, industry and government, along with interdisciplinary science input, are essential to ensure that these innovations are used ethically and responsibly.

PMID:
28703222
PMCID:
PMC5567147
DOI:
10.1038/ejhg.2017.75
[Indexed for MEDLINE]
Free PMC Article

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